Defining, and re-defining Advocate – From the archives

 This post was originally written for a blog hop to celebrate March 21st 2013 – what we call 321 Day in honor of Trisomy 21.
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According to YourDictionary.com, the definition of an advocate is: someone who fights for something or someone, especially someone who fights for the rights of others.  When my son was born, in 1987, I was 20-years-old.   I had no idea what Down syndrome was, or how to advocate for someone who had it.  I’ve spent the past twenty-six years learning. As I reflect on what I’ve learned on World Down Syndrome Day, I realize that my initial idealism has turned to realism; and my definition of what it means to be an advocate for my son has changed drastically over the years.
When Joshua was diagnosed, I turned to the only sources I knew – medical books.  What I found scared me, plain and simple.  Luckily, I was introduced to the world of support groups, local and national, fairly early on.  My first lesson was that labels are delivered with a double-edged sword.  They are necessary in order to receive any services; but they come with a boat-load of stereotypes and assumptions about who a person is and what they will be able to do – ever.  So, the first “job” of an advocate – in my book anyway, was to learn what the label means to others, and then completely disregard it in reference to my son.   No label was going to limit what I thought about Josh, or how I treated him.   He was my son, not a “condition.”

The next important lesson for any new parent-advocate in my situation came when I realized that services are not always offered to parents automatically.  You have to look for them.  There were many times when someone in my parent’s group or a speaker at a conference would mention a service that none of the “professionals” I had been dealing with ever had.  I was naïve enough in the beginning to believe the professionals I saw on a regular basis when they claimed to want what was “best” for Josh.   After all, they had been doing this for years, I was new.   They had the authority and power, I was just a parent.  Maybe so, but I was the only one who knew Joshua for who he was, not what the books said he should/could/would be.   This realization is what drives every parent-advocate to fight for more from the school system.  It’s what makes us “difficult” to deal with.  It’s also what gets our children what they need, not just what has been done in the past, or what the budget allows for.  That is one form of advocacy.

So, there I was.  I was energized by my new knowledge of the law and new research about inclusion.  Times were changing and I was lucky to be facing the daycare/school situation armed with more rights and services than the previous generation of parents.  Attitudes were changing and all I had to do was help educate and inform people who interacted with Joshua.  Or so I thought.  I learned the hard way that “forcing” change sometimes comes at a high cost.  That cost was usually paid by my son.  I managed to advocate our way into a daycare setting that was less than enthusiastic about accepting him.   One day when I went to pick him up at the regular time, he had a gash in his chin that required 12 stitches.  The director at the daycare hadn’t bothered to call me, and let him continue playing in the dirt and mulch after it happened.  Needless to say, that experience has greatly impacted my thoughts about how hard to push when people seem apprehensive about their ability to accommodate special needs.  It has also impacted my belief in professionals in general.  You become very skeptical when your child is hurt by someone you’ve trusted to take care of them.

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My belief in the theory of inclusion and my desire to keep Josh safe were at odds during the entire course of his “Free Appropriate Public Education.”   Looking back now I realize that his academics took a back seat to behavior and “life skills” training, even in an inclusive setting.   As he got older, inclusive placements became less of an option.   For example we had the choice in high school of taking pottery, with the other special education kids and the allotted aide, or allowing him to take guitar (which he loved) without an aide.  I dreaded each IEP meeting and parent conference.   Sometimes when I read the comments written by the teachers, I think they must have been talking about a different student.  I was relieved when he finished his senior year, but I was also worried about what came next.   Advocacy at this stage meant balancing his right to be included with his right to be safe.

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Advocacy after high school is a completely different animal.  Services are still an issue, but getting any requires more work and planning.  Being nomadic by nature and changing states makes the prospect even more difficult.  There are fewer services to be had and most involve long waiting lists.  There also comes a time when guardianship becomes an issue.  If you’re like me, you’ve worked extensively on allowing your son/daughter to have as many choices as possible.  As an advocate, you’ve stressed the importance of allowing your son/daughter to make those choices for him/herself.  Then they turn eighteen.  In my case, there were always situations or “what if’s” that brought up the subject of guardianship.   What if he doesn’t want to go to the dentist?  What if he thinks he can leave home to become a rock star?  What if he answers the phone and commits to a telemarketer?  So far I’ve held out and chosen not to become Joshua’s legal guardian.  As time goes on and I get older, I’m sure it’s an issue that will come up again and again.  I’ll admit I don’t know the answer yet.  Constantly learning and looking for answers is another “job requirement” for any advocate.

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So now that Joshua is an adult, what does advocacy mean to me?  If you had asked me that a few months ago you would have gotten a completely different answer than you will today.  A few months ago I would have told you that my main goal is to make sure Josh is happy, healthy, and feels safe.  I thought my days of active advocacy were over.  But, you never fully retire from being an advocate for your child.  I learned that lesson two months ago when (Robert) Ethan Saylor was killed while in police custody for staying too long at a movie theater.  Ethan and his family have been friends of ours since 1987 when Josh and Ethan were born.  Ethan was two weeks older than Josh.  His mother introduced me to the world of advocacy and support groups.  Networking with other parents taught me more than any book or professional who had been assigned to us.  The fact that he was taken from us so unexpectedly (not to mention that I can totally picture the same thing happening to my son) has re-awakened the political advocate in me.   By that I mean that part of me that grieves about the status-quo and how slowly change happens; the part that spends countless hours trying to think of ways to make change happen, not just for me and mine, but for everyone.   Right now, advocacy means fighting for justice!

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If the dictionary definition of an advocate is someone who fights for the rights of others, than I think every parent who has a child who happens to have Down syndrome is one by default.   By simply doing what it takes to provide for their own child, they pave the way for those who come after them.  For me, this World Down Syndrome Day is about recognizing those advocates who came before me, and realizing that in some way, my efforts helped those who have young children today.  However you define it, in whatever way it manifests itself in your life, embrace your role as advocate and share your successes, and failures, with others.   If there’s one thing I’ve learned about being an advocate after twenty-six years and talking to lots of other parents it’s that the word means different things to different people.   It even means different things to each person at different times.   What’s important is to realize that there is always more work to be done.               Happy 321!
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