Advocacy Blog Series: Parents as Advocates

I think it is crucial to discuss the aspect of advocacy that blends into the role of parenting.  When a child is born, the parent is automatically the advocate unless the child is a ward of the state or another family member.  There is an instant responsibility that goes deeper than basic care and devotion.  Every time that child has a problem, is ill, needs supportive services in school, requires a legal guardian for sports, or anything else, the parent falls into the role and becomes the child’s advocate.  Some parents take to this quite easily, and if they are lucky, they will make it through the 18 years of guardianship without a hiccup.  However, it is likely that something will happen.  The child will probably be hospitalized at some point, they may require counseling for depression or more severe mental illnesses, they may be a victim of bullying or abuse, and they may have a physical illness.  It is almost guaranteed that a parent will face at least one serious issue where they must advocate for their child.

What does this mean?  It means you must be willing to be informed, to question, to learn, research, have sleepless nights, make tough decisions, and do whatever else may be necessary to help your child get the help they need.  The system, whether educational, medical, state, or judicial, should be there to support you and your child as well, but things can go wrong.  Even the people working in the system may make misinformed decisions, stereotypical assumptions, or mistakes.  This is why it is so important for parents to put the extra effort in.  here are a few examples:

When my son struggled with mental health issues that threatened the safety of my family, we had to research his conditions, understand the medications, seek residential care, and fight the doctor who attempted to place him in a group home where he would have ended up in the state system.  It was not easy.  In fact, most of my days were spent researching, making phone calls, or sending emails.  The one truly important lesson I took away from this situation was the need to document everything.  When the doctor was acting unethically, I began to copy very detailed emails about his plans and our concerns to people in the government, at the top of the insurance company, and advocacy agencies.  This had a major impact, all info was documented, and he was fired.  We were able to get my son into a facility that was able to help him.

When my daughter was diagnosed with Hypoplastic Left Heart Syndrome, we were shocked at first.  Thankfully, I had an incredible woman at the hospital who was an advocate for me as I tried to get my daughter on SSI.  It was a nightmare, and I had suffered abuse over the phone from my local SSI representative.  I was not strong enough at this point to fight, but this woman helped me, she fought for me, and was a perfect example of why advocacy is important.  After I grew stronger, and did some research, my life became about doing everything I could to care for my daughter.  My husband and I were proactive, we kept medication logs, medical records, notes, and anything we could to help track her care between surgeries.  This was another example of the need for documentation, but also the realization that outside help from an advocate can be incredibly helpful.

Finally, in the educational arena, we have had to work very closely with my son’s schools to accommodate his disabilities.  He has had an Individualized Education Program (IEP) since he was in kindergarten, and it was very useful.  For a parent, it can be confusing at first, but there are a few things you can do to help.  First, read the school’s handbook, next, research IEPs, and look at specific state regulations.  Pay attention to your child and how he/she learns, responds, calms, or reacts at home.  Take notes on a regular basis about things that help and things that do not.  This is information you can supply in IEP meetings.  The more knowledgeable you are about the school system and what accommodations can be made, the better you can be at advocating for your child.  You also need to be open to recommendations.  If something doesn’t feel right, say no, but listen to reasoning first, and do not be afraid to ask questions.

These are only a few examples, but they truly express the ones that stand out to me as learning experiences.  Every parent will need to step into this role in some way, and some more than others.  Do not fault yourself for mistakes, or feel guilty when you miss something.  There are handbooks everywhere, but none that can truly guide you in your specific situation.  As an advocate, it often feels like the weight of the world is on your shoulders, but if you reach out for others, you may be surprised at who is there, and who has been through similar experiences.  Please feel free to share your experiences.

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Advocacy Blog Series: Advocacy Defined and Explored in Health Care

We hear about advocacy often, but how can we define it?  Advocacy is a part of various careers, and can become a massive part of one’s personal life.  The simple definition is the way in which a person influences others to take up a cause, support a policy, or help with decision making.  Advocates work in social work, politics, law, public relations, policy making, education, medical fields, and many other fields.  Advocates can be the ones standing by children who have been abused as they walk into a courtroom, they may help special needs children get the educational help they need.  Mentally ill individuals rely on advocates as they face treatment, juvenile offenders need advocates as they face the criminal justice system.  The fact is, advocacy is everywhere.  It is a part of society as we seek to help those who need help.  Some advocates are removed from the situation, but help to write the laws that will ultimately protect individuals.  Some are inspired by an experience in their lives that helped them to see what changes were needed.

Why is advocacy so important?  It is important because many systems are broken.  As the world continues to grow, technology advances, and societal expectations change, more individuals begin to see the need for change.  Because everyone is different, one person may prefer the hands on work with individuals who need their help, and others may prefer to lobby and become an activist.

I have seen many systems that need change, and I plan to work in advocacy.  However, I am still trying to determine how I can best make a difference.  I love to write and plan to write a book to help parents with sick children to become advocates for their children, but as I have moved along in life, I have found even more battles that need to be fought.  I have found the medical system to be broken for both physical and mental health.  I have seen my parents as caregivers struggle to get the correct care for our loved ones.  I, as a mother to two special needs children, had to fight the system.  This should not be the case.  Parents and caregivers have enough stress, and the healthcare system  is supposed to make people better, not worse.  The bigger the divide becomes between caregivers, patients, and professionals, the more the care is affected.  Humanity seems to be a thing of the past, and I am finding that I wish to fight for better communication between these two sides.  How can a bridge be built when the funding is supporting a bigger gulf.

This is a topic which is finding its way into more places from blogs, to news, to a whole field at Columbia University called Narrative Medicine.  People do not want healthcare to continue on this path, they want to connect to professionals.  Many professionals find that they do not have the time to care for patients like they thought they would.  If both sides are unhappy, the system is not working, and people need to rise up to initiate change.  Like any great battle, it does not happen quickly, it must be fought from various angles, and this is why more people need to become advocates.  More people need to be strong, and stand up for their beliefs, their loved ones, and themselves.  I would love to hear others comments about this issue.

Empowering Women Series: Gratitude

Today is Thanksgiving, and it carries with it the traditional aspect of giving thanks, or showing gratitude for what we have and for the people in our lives.  This is an important tool when it comes to empowering women.  It may seem like common sense that we should be thankful, but sometimes, we do not see the various ways to express gratitude or realize who we should thank.  When women become empowered, it is because they have accepted support when it was available, reached for opportunities when they were in grasp, and they developed the skills necessary to become strong, determined, knowledgeable, and confident.  As women flourish, they should express gratitude for the opportunities and support they have had because it helps them to remember where they began, and to realize there are other women that need the same support.  The expression of gratitude can lead to the act of giving.

I am a woman who was blessed with a group of family and friends who supported me.  They encouraged me, stood beside me when I made difficult decisions, and listened to me.  Without these people, I may not be where I am now.  It takes a lot of strength to rise from abuse to become confident and accomplished.  I worked hard, but it is important for me to recognize the people who guided me along the way.  I have had professors and people in my network who validated me, and pushed me harder.  These people deserve my thanks.  I have been presented with opportunities that have made a huge difference in the direction of my life.  I had to grab the opportunities, apply for them, or work for them, but the fact remains that without them being available, I would not be where I am.  Part of being empowered is the realization that success, accomplishment, etc… is a group effort.  We all gain when we give.

Three types of gratitude can help you to bolster empowerment:

1.  A simple thank you to mentors, teachers, advisors, employers, family, or friends who have helped you become strong can not only strengthen your relationship, and it can inspire them to continue helping others.

2.  When you are grateful you may be more willing to give back and help another woman rise from abuse, lack of self-esteem, or any other situation that limits her.

3.  Any connection made when networking should be recognized, and if it was from a speech, or someone who offered stimulating conversation, a thank you email can encourage a stronger connection and make them more willing to associate with more rising women.

This is only a small list, and there are so many ways to express gratitude and various reasons to do so.  The important thing is to realize we are not born skilled and ready to take on the world.  We all take various paths, but there are people and experiences that help to make us stronger.  Without recognizing this, we miss an opportunity to forge stronger relationships and to give back.

Empowering Women Series: International Day for the Elimination of Violence Against Women

Yesterday was the International Day for the Elimination of Violence Against Women.  I could have posted yesterday about violence and how desperately we need to fight against the abuse that strips women and girls of their human rights.  However, I waited until today to make a point.  Violence, abuse, and inequalities plaguing women and girls lead to them living in poverty, contracting diseases, losing any chance for an education, and suffering indignities beyond comprehension.  Yet, the day recognizing this issue has past, and people who are not in this situation or working with women who have been in this situation can move on with their lives.  They thought about it, but now, they can move on until the next campaign or recognition takes place.  How does this fix the problem?

Awareness is key to finding resolutions, but if there are only certain days that this problem is brought to light, people will forget.  It is easy to forget what is not seen.  It is like the saying, “out of sight out of mind”.  The women and girls that are enduring appalling conditions right now need help.  The woman in the house down the street that hides her bruises with makeup, and looks down in the hopes people will not see her eyes where her story lies in wait, lies in wait for someone to rescue her.  She needs help right now.  The mother, sister, cousin, friend, and aunt who carry their abuse in silence need your help to reassure them their voice can and should be heard.

I was one of these women.  My first marriage was filled with physical, mental, and sexual abuse. I was forced to stay in the shadows of our apartment.  I was controlled, used, and treated as though I was nothing.  I lost every bit of self-esteem I had and I only left after my son was born because I knew he was worth more.  I did not recognize my worth at the time because that is what happens to women who are subjected to violence regularly.  I was lucky to have family who stood by me and helped me when they found out.  There are women who do not have anyone, and they are waiting for someone to find out, to help them.  I am strong now, and this is a topic I am very passionate about.  This is an issue that needs to be addressed daily because countless women are hurt daily.

When we make the world a place that is safe for women to open up about the pain and suffering they endure so they can find peace and protection, the world will become a better place.  When women are free to express themselves, get an education, and lead in their jobs and communities, their families, companies, and communities become stronger.  We need to be willing to speak up, help others, and hold the hands of those weakened by violence.  This is an international issue, but we can start in our own communities.  Support a women’s shelter, speak to abused women and offer them your strength and support, be the one who reports abuse if it is happening, and you can make a difference.