Thursday, April 19, 2012

Advocate or Enabler?

When you have a child who has one or more hidden disabilities, you find out that you have to work harder than you expected to advocate for your child. A lot harder!

People look at others in preconceived ways. In some ways it's part of the human condition, and a way we can quickly decide how to relate to someone before we get to know them. Some of those boxes we put people in are valid and keep us safe. I've done it myself. I've locked my car doors in a high crime neighborhood when I saw a group of young guys hanging on the side of the road by a stop light. I've told my young children that if they ever got separated from me and are lost, go to a mom with kids, a police officer, or if in a store, to a worker at the checkout counter.

Unfortunately, these boxes we put people in are not perfect. We judge people on the color of their skin. There are pedophiles out there who seem like nice guys in the neighborhood. People expect our kids to be able to do things they just aren't mentally and emotionally able to handle.

I can't tell you how many times educators, doctors, and others criticized me or my kids because they don't "look" a certain way. They thought the way I handled discipline, homework, rages, or whatever else was wrong because they had put my kids in a certain box that just didn't fit. I've had a few educators who were supposed to be special ed experts tell me that Ms. D didn't "look learning disabled", and wasn't far enough behind in school to even test her. What does "looking learning disabled" mean? They thought the problem was we weren't practicing the homework enough, or not reading to her enough, or not doing something, because otherwise she'd do better. It was Ms. D's work ethic and my fault she was struggling. Later we found out her IQ is pretty low. That's why she struggled! They had thought I was an enabler when I was trying my best to be an advocate.

When Ms. D was in the hospital with the pseudo seizures, I told the neurologist that Ms. D was diagnosed  with FAS and that might be a cause of the problem. He looked at me and said, "She doesn't look FAS." I told him that some of the FAS features fade a bit after puberty. I didn't tell him, but I was wondering if his extent of knowledge of FASD is a textbook picture of a white kid with FAS. I really don't make up the FASD label to get more attention, because I'm lazy, or to let my kids get away with things. I do it to help my kids to grow and to change their environment, so that they can better relate to the world.

It takes a lot of energy to advocate for my children. Sometimes I make good decisions that don't make sense to others. Sometimes I make mistakes. Sometimes I second guess myself. Parenting a child with a hidden disability is difficult, not just because of the problems we have to overcome or work around, but its difficult because others have unrealistic expectations of your child. People wouldn't think of criticizing a child with Down Syndrome if that child couldn't do a school task. Yet my daughter has a similar IQ, and people still expect her to be at grade level because she looks so "normal". My son, who isn't as quite as affected prenatally by alcohol, has emotional, sensory, and regulation problems. Mix that with RAD and past trauma, and we find ourselves in situations that others just don't understand. I have to parent him and his sister differently than I had my other kids. I let some things slide. Other times it's more important for me to calm them before any discussion of their actions happens. Sometimes I have to ask myself if I'm being an enabler, or an advocate. It's pretty confusing, and I know my kids!

Sometimes I wish the world would look at my kids the way God looks at them. Sometimes I wish I'd do the same! In the meantime, I need to learn how to be a better advocate for my children, for people with FASD, and for others with disabilities that are hidden and don't fit in people's preconceived boxes. Because when we understand the roots, and help others to understand, then we can help our children to grow to be the kind of people God intended for them to be.

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