October 7, 2010

Verb 7 – Advocate

As with understand, there are two applications for advocate. The first and easiest way to advocate is for Alex. The second and harder way is to teach Alex to advocate for herself, or self-advocate in special education speak.

As soon as I found myself in the “normal” educational system I recognized by embracing the verb understand, that five and six year olds and their parents did not know Alex or even know anyone with down syndrome. It was part of my responsibility as the parent of our very special daughter to advocate for her not only with her peers, but also with the school district. I discovered that the earlier her peers and her school learned that I was an active advocate for my daughter the easier it would be down the road.

As an aside, this was proven to me when we relocated to a different and less well funded school district when Alex was going into 7th grade. I learned very quickly I had to start advocating for Alex all over again. This has been challenging, and although we love where we live I find myself advocating for Alex, for her education and her inclusion on a daily basis.

This is not a bad thing, I am actually proud to set an example to other parents in our school district around advocating, as children with special needs are more of an anomaly in a rural area, and our schools have not been paying much attention to special education programs. I have made some progress and even been one of the founding members of our SEAC (Special Education Advisory Council). It is worthwhile to google SEAC if you are not familiar with the concept.

My first acts of enthusiastic advocating occurred when Alex started first grade. I met with her teacher (regular ed) to talk about a success plan for Alex. One of my concerns from the beginning has been the other kids; how would they react to Alex, and would she be included in activities. I have always made it my business to meet with the teachers before school started to “brain storm” about tactics around this. I am happy to say they are always receptive to me and my team approach to educating Alex.

One of the things I did in first and second grade that worked well was meeting with Alex’s class about a month after school started. As there were actually four classes in each grade, we (Alex and I) met with two classes at a time. Our goal was to talk about Alex, demystify down syndrome and answer questions. Alex and I started each session by reading a book Our Brother Has Down's Syndrome by Shelley Cairo. It is the story of a little boy with down syndrome named Jai, as told by his sisters. It is easy to read and teaches the lesson that Jai is just like everyone else.

Alex and I sat at the front of the classroom, read the book, showed the pictures and stopped for questions along the way. We had practiced little sections for Alex to read, and her classmates knew she was fully vested in our session. We followed this with a questions and answer session.

It is fun to think back about those little kids, so excited to know Alex, and meet her mom. First and second graders love to talk, and share about themselves. I would ask them to share what was different about them, and learned many interesting family secrets. In the end, I believe the kids left with the lesson that Alex was only different because she has down syndrome. She has brown hair and green eyes, she went to the same school as they did, and she loved to play sports. She does have an extra chromosome, and that is what makes her different. The kids loved that chromosome part of the book.

Each of those two years I sent a letter home to the parents, explaining the lesson I had taught, and offering myself as a resource. Although I did get verbal comments from the parents, it really was a non-event to everyone involved; Alex was Alex and part of our community. By the time I had read the book two years in a row every kid in the school had heard the story at least once. The next four years were easy and although advocating is always important in terms of requesting services, it was never difficult.

Self advocating is extremely important and also very hard to teach. I believe Alex knows what she must do in terms of making her needs known as well as standing up for her rights. However, she does not have the tools; the language or the confidence. Our dilemma, or perhaps our responsibility, as parents of a child with down syndrome, is to recognize that deep down in our hearts we know that Alex must learn to fend for herself, advocate for herself and find the strength to succeed in any situation. We must teach her and prepare her for a world after us. This is one verb I think about every day.

I have always advocated and will always advocate for Alex, but she must also learn to advocate for herself, just like every other child, and she will succeed!


  1. I love your thoughts on school, especially living in a rural area like we do too. In one regard, Claire will be different because there aren't many other kids like her in our area. At the same time, everyone will know her and she will just be Claire....

  2. What a powerful post... and so educational for parents at the very beginnings of their own advocacy journey. What struck me most was your acknowledgement that Alex doesn't have the language or confidence (yet) to advocate for herself. That's what hurts my heart most when it comes to our Charlie. So we keep moving forward!

    1. Hi Maureen - this is not the case anymore. Alex has matured significantly. 19 has been a great year!


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