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.
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.