"YOU Are Your Child's ONLY Advocate"
I just finished reading a blog post of a friend of mine who has a child with special needs. I have a couple of friends that have kids with special needs and they often write of their frustrations with doctors and specialists who don't seem to listen and take the time to learn about the individual child. As a parent, there are few things more aggravating than needing care for a child and feeling like you're being short-changed. As a mother with a special-needs child, I feel justified and qualified in sharing my thoughts on this issue. I'm really passionate about this. Technically, I have two special-needs children; Brittany is diabetic and Damon has a severe speech impairment and it's often very difficult for others to decipher what he says.
Several years ago, while we were living in Nova Scotia, and shortly after Brittany's diagnosis of Type 1 Diabetes, I was having a conversation with a friend of mine. She had two kids with very specific dietary needs and she had been through the hassle of trying to get what her kids needed from healthcare professionals. She'd been dealing with her kids' issues much longer than I had dealt with Brittany's issues. We were discussing how hard it can be to get people to listen and pay attention to the specific things our kids would need as they grew up and attended school and how sometimes a parent really has to make a lot of noise in order to get those things. At one point she said to me, "You are your child's only advocate." Those words were seared into my mind. And whenever someone, whether a doctor, nurse, a teacher, or other educator, is being "difficult" and I'm tempted to compromise just to save face, however at the expense of my child, regardless of how insignificant that compromise may be, I remember that phrase. I have been and will continue to be a pain in the ass if thats what it takes for my kids to thrive and be happy. I have no problem with this because I am MY child's ONLY advocate. If I don't fight for what they need then who will? Nobody. Because let's face it, nobody loves or cares about your kid the way you do.
If you ever find yourself in a situation where you're not getting what you need, do what it takes to get it. Be a jerk, if it comes to that. Don't make your kids suffer unnecessarily because you're too afraid to make waves. Make yourself be heard. Insist on receiving the information you need to understand things and make informed decisions. If healthcare and school workers won't do the things within their power to assist then go over their heads to a higher-up. If you don't like the doctor, go find a new one. If you're having issues with the school just mention 504 (for kids in the U.S.). Kids have civil rights. Do these things because YOU are YOUR child's ONLY advocate.
Several years ago, while we were living in Nova Scotia, and shortly after Brittany's diagnosis of Type 1 Diabetes, I was having a conversation with a friend of mine. She had two kids with very specific dietary needs and she had been through the hassle of trying to get what her kids needed from healthcare professionals. She'd been dealing with her kids' issues much longer than I had dealt with Brittany's issues. We were discussing how hard it can be to get people to listen and pay attention to the specific things our kids would need as they grew up and attended school and how sometimes a parent really has to make a lot of noise in order to get those things. At one point she said to me, "You are your child's only advocate." Those words were seared into my mind. And whenever someone, whether a doctor, nurse, a teacher, or other educator, is being "difficult" and I'm tempted to compromise just to save face, however at the expense of my child, regardless of how insignificant that compromise may be, I remember that phrase. I have been and will continue to be a pain in the ass if thats what it takes for my kids to thrive and be happy. I have no problem with this because I am MY child's ONLY advocate. If I don't fight for what they need then who will? Nobody. Because let's face it, nobody loves or cares about your kid the way you do.
If you ever find yourself in a situation where you're not getting what you need, do what it takes to get it. Be a jerk, if it comes to that. Don't make your kids suffer unnecessarily because you're too afraid to make waves. Make yourself be heard. Insist on receiving the information you need to understand things and make informed decisions. If healthcare and school workers won't do the things within their power to assist then go over their heads to a higher-up. If you don't like the doctor, go find a new one. If you're having issues with the school just mention 504 (for kids in the U.S.). Kids have civil rights. Do these things because YOU are YOUR child's ONLY advocate.
Comments
Thank you so much for writing this!
This is the biggest truth in parenting. It is definitely hard to surf through our desire to be polite and socially-appropriate, but when it comes down to it, that can hold us back from doing what we think we need to do.
I have many times been the crazy mother in the ER, doctors office, in the neighborhood, at church(of all places- yes you need an advocate there as well.)
At first, it was hard for me. But I just don't plain care anymore what people think.
I do what I think. However my kids turn out will be my fault or my reward.
Rock on!