Advocacy

We’ve been sharing info graphics all week about types of advocacy, hoping to break down a concept that is familiar to so many special needs parents and families.

We’ve talked about self advocacy and the ability to speak up as an individual, knowing our strengths and struggles, understanding our personal interests and needs as well as communicating effectively.

We will also explore informal individual advocacy where we as parents, friends, family members or agencies speak out and advocate for vulnerable people. Formal advocacy more frequently involves organizations that pay their staff to advocate for someone or for a group of individuals.

Finally, we will highlight systems advocacy which is more about changing policies, laws or rules that impact how someone lives their life. These efforts can be targeted at a local, state, or national agency. The focus can be changing laws, or simply written or unwritten policy.

As I mentioned, most of us parents of special needs children are likely pretty aware of individual advocacy for our children. We are used to making sure they have access to education, healthcare or other services and we often have to work hard to educate ourselves from everything from complex medical conditions to ADA laws.

I do believe that there are strategies that we can use to get the most out of meetings with specialists, administrators, educators and service coordinators. As an advocate, you decide exactly what that action looks like. Whether you’re a seasoned veteran or someone looking to make a difference, here are five tips to help you along your advocacy journey.

1. Define your motivation
Oftentimes, personal experiences – whether lived or shared – are some of the best motivators to begin researching, finding answers, seeking second opinions. Are you trying to achieve a goal just for your child, a group of children or as part of a nationwide effort? Knowing if your goals are short term or long term, or to find a solution for an individual such as accommodations in an IEP or 504 or if you are trying to have accessible doors installed at your child’s school will determine how long and how hard you will have to prepare. By defining our goals first, we won’t spend precious time or resources on short term solutions for long term problems or vice versa.

2. Stay informed on what matters to you most


Basically, this means assessing your priorities. Think about parenting in general and how you determine with your children which mountains you are willing to die on. For example, some parents want kids to eat all of their dinner but don’t really mind if they leave their toys out. Other parents insist on getting school work done before dinner, but then allow unlimited screen time after dinner. Parenting choices are just that and we have to kind of pick and choose what matters most in our families and aligns with our personal values. In the same way, there are going to be obstacles, and things that are mildly annoying. On the other hand, there might be things that are unsafe, not inclusive and discriminatory that demand our attention. In negotiating and advocating, we need to make sure that we calmly and effectively make our case, based on needs, facts and what is in the best interest of our children.

As our kiddos get older, it’s just as important to get and stay informed on the issues and why it matters. While you can certainly be an advocate without knowing every single detail about your cause, the more knowledgeable you are on the subject the more prepared you will be to engage in debates and ultimately increase awareness to your cause.

3. Find your advocacy style



While there are certainly many different ways to enter a meeting where you are interested in having yourself heard, kindness and respect will serve you well. Of course we will be emotional. We are fighting for our children and in many cases, the outcomes will directly determine their quality of life, educational goals and heath.

My grandmother always told me that I would catch more bees with honey than I would with a stick. Looking back, I thinks she was hoping I would stop being so bossy toward my younger sister.

I learned that it is important to find a style that fits best with your personality and goals. Do you prefer writing an email, one on one meetings, speaking up at a school board meeting or consulting with a team of experts. Emotionally, we are usually stretched thin and often don’t have the bandwidth to filter our every word, especially when we are working on behalf of our little ones. No one knows you better than yourself, so take some time to determine how your own demeanor, word choice and tone might be received both positively or negatively. In most cases, the people working for and with our children are going to be in our lives for a while. At one particularly intense appointment with Andrew and his urologist, I made a sarcastic remark that sounded a little more snarky than I intended. As a result, the surgeon did not take much I had to say seriously for several years and I had to really work to prove that I was indeed committed to the protocol that we had decided upon and took his work, as well as Andrew’s health, very seriously.

4. Get involved and meet with others

There are communities such as this one, groups, organizations and advocacy efforts united for a common cause. Keeping in touch with others who might have already successfully worked toward or found solutions that you are dealing with is a great way to increase our own awareness. Not to mention that groups can achieve much more than a single person could do alone. Moreover, by working alongside other individuals with similar goals or struggles, you learn more about yourself, join a growing cause and make great new friends along the journey.

5. Use your voice
The last and probably most important tip to being an advocate is simple: Take action. Action is the cornerstone of any advocate, whether it’s speaking up for yourself or your child. No matter your advocacy style, the key is to use your voice and share your story.

It behooves us to create positive interactions and find solutions that work for our children without creating treacherous mountains out of navigable hilltops. Let me be clear that while serious conversations may need to happen with a head nurse, a principal or manager, make sure that you maintain respectful language and professionalism no matter what your style may be.

Though advocacy comes in many forms, you ultimately define what it means to be an advocate. But at its core, advocacy involves taking action and taking a stand for a cause you believe in.

Leave a Comment

Your email address will not be published. Required fields are marked *