Every year that Emily has been integrated into regular education classes I have created either a Shutterfly card or book that I go in at the beginning of the school year and share with the kids. I try to make references to how similar Emily is with the things that she likes to do for fun. I usually try to incorporate some medical details about her and each year I get a little more detailed as the kids get older and can handle and understand so much more. Here are the past few that I have created starting with pre-K. The next blog contains my most recent one for 2nd grade. Please feel free to share this idea or use it yourself!
Every year I go into Emily's regular ed class and share with them a little bit about Emily. I like to compare her to them by using examples of activities that she likes to do that are age appropriate. Most years I use Shutterfly to create a card or a book to tell Emily's story. This year I did a hardcover book that I plan to leave at school all year for the kids to read as they chose. I will also make my annual trip to talk to them the first or second week of school. This seems to help break the ice for the kids and allows them to ask me questions without fear.
The ride operator did not want to let Emily ride this ride because of being in a wheelchair. I convinced him to let us on and to this day it is her favorite ride!! The bouncing makes Emily's muscle tone kick in and she comes to life!
As a parent it is just part of our roles to advocate for our children. We advocate for them from the time they are born until long after they leave our sides. But what does advocate really mean? The Merriam-Webster definition of advocate is: one that supports or promotes the interests of another OR one that defends or maintains a cause or proposal. These two definitions look so straight forward and easy right? Then why is it that when you advocate for a child with special needs does it feel like a fight and not just support?
The definition of the verb form of fight is: exert oneself continuously, vigorously, or obtrusively to gain an end or engage in a crusade for a certain cause or person; be an advocate for. This seems to fit the feeling of what it is like to advocate for a child with a disability. I have never had a problem standing up for myself or anything that I strongly believe in. However, it seems that being an advocate for my daughter, Emily, sometimes feels more like a constant battle with insurance companies, the county, school system, doctor's offices and more.
When you are out there advocating for your child, remember that if you do not speak up for them no one else will. You as a parent are the only one who knows everything there is to know about your child. You are their voice when their voice can not be heard. If you don't "fight" for what you feel is important for your child's well being then they will most likely go without it. Do not let 'others' wear you down. In the words of Bob Marley: "Get up, stand up: stand up for your (their) rights! Get up, stand up: don't give up the fight!"