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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