Advocacy: What Does That Word Mean to You?

Girl with Down syndrome holding hands with two adults outdoors.

The word “Advocacy” can mean a lot of different things to different people, however, Advocacy, by definition, is any action that speaks in favor of, recommends, argues for a cause, supports or defends, or pleads on behalf of others. That definition makes it easy to see how parents/caregivers to those with special needs can assume this role of ADVOCATE. From the time our children were little, we advocated for them and their needs as they reached for their next goal or developmental milestone. Advocacy can be done for our child-related to emotional, physical, or educational needs.

Advocacy can also come from the child (self- advocacy) when they speak up for themselves. This is a skill that is learned as children grow up and are taught by parents and caregivers. For those with special needs, this skill can be challenging to learn.

With all the above being said, how do you begin to learn how to be an advocate for your child, and how do you teach the skill to your special needs child?

Let’s begin with the parent/caregiver.

Learn All You Can About Your Child’s Diagnosis or Disorder:

I think this is the most important first step: Knowing as much as you can about your child’s diagnosis. This includes the terms used, the medical words talked about, the signs they themselves show. Learning the words helps you teach the world about your child. Knowing how your child shows the disorder or disease helps you teach those who will be working with your child. And by knowing all you can, you will be the expert in YOUR child: You are the person that will KNOW and UNDERSTAND your child the best. This way, you will be on the road to being the advocate they need to succeed in life.

Find Resources-

There are so many websites available to help you learn more about your child’s needs as well as hearing from other families who are going through similar situations.

You can use these resources to keep your knowledge current, as well as finding support from other parents.

Be Organized-

Keep good records……of everything. Whether it’s a medical record or those from the school, it is imperative to advocating well for your child. Find the system that works for you. Some people like binders that can be updated each year and others like folders, one for each year.

Drowning in Paperwork Here’s What Helps Us

Learn to keep records stored in a manner that is easily accessible and allows you to find the information you need quickly.

Keep them for many years; you do not know when you might need a certain piece of information.

Set Goals

Set goals for an IEP, a 504 plan, or your own personal goals. Goals help to give you and everyone working with your child a focus and purpose. They help to create measurable successes and provide feedback for the forming of future goals. They help your team to work well together for a common desired achievement for your child. via understood.org

How to Set Clear Goals and Plan Naturally

Talk to Family

Sometimes it is harder to explain your child, their diagnosis, and needs to family compared to strangers. Maybe it is because there are a lot of emotions from both parties, but, in any event, talking to your family and helping them understand your child will make life much easier. You will not have to worry about behavior at a family gathering, rather you will hopefully have support instead. You will not have to explain words and terms when you are in a crisis with the school, they will already know them. You will not have to worry when you show your emotions, they will know what journey you are on.

Your advocacy for your child can require a great deal of work, but, simply starting is the key. Explaining their diagnosis and how they work will set the groundwork for more conversations to come.

Be Involved

To be an effective advocate means being involved. In their school, schoolwork, therapies, and activities. Plan to visit the school and ask questions. Plan to be an active part of the IEP process if that pertains to your child. Ask questions of the therapists, teachers, and support staff. Call a meeting to talk if you feel it is warranted. Share ideas, plans, and feelings. You are part of the team for your child. All you do comes from a place of caring and the desire for the best understanding and care of your child from others.

Related: Advocating for Your Child

Now we can take a look at growing the skill of self-advocacy for the child…in other words: Teaching them to “speak up for themselves.”

Learning self-advocacy is a challenging thing. This can be the case for neurotypical individuals but more so for those with special needs. There can be an issue with communication, anxiety, or physical issues that are blocks to letting the world know what their feelings, wishes and thoughts are.

Here are some ideas to begin the road to self-advocacy with your child:

Teach

Teach them in a way that works best for them. Some children are visual learners, others are auditory learners, and others learn by manipulatives. There are so many ways to reach a child and as the parent/caregiver, you know the best way to communicate with your child. Begin there.

A smiling family walks together outdoors.

Embracing Your Child’s Best Ways of Learning 12 Different Ways to Learn

Teach them the words for the disorders or diagnosis they have. Provide them with the correct words to describe themselves. This will give them an understanding of why certain things are hard to do, or why they need to get breathing treatments, or why they can’t read well. And by giving them an understanding, it makes it easier for them to use those words to help others understand as well.

Practice

Work through a scenario where your child needs to use the words taught in the above. Practicing helps them to gain confidence. Again, this is all done to the best of your child’s ability and in the manner that they communicate best.

Provide the Words

Sometimes our children need help finding words to express their wishes. Providing the words and practicing them helps them to identify emotions and feelings that will arm them with good tools to use on their journey.

Give Permission

Many times our children wonder if they CAN speak up about things. They need to know that it is okay to express how they feel about something, share their emotions, and be their own advocate. They need to know that they have permission to do this…respectfully, of course.

Review the Above…Often

The road to self-advocacy is long and winding. So, plan to do the above over and over again as your child grows and develops and as their needs and situations change.

Advocacy (for us as parents/caregivers or for our children in the form of self-advocacy) is not something that “just happens.” It takes work and focus to achieve and, in truth, is ever-evolving. Starting the journey is the first step and keeping your eye on the goal of helping your child will be the next step. This is a “marathon,” not a “sprint.”

Helpful Articles

You May Also like

This post originally appeared on our September/October 2020 Magazine