so special
Everybody hears the inspirational rationalizations that come with being a special needs mom, “God only gives you what you can handle”, “Special kids get special moms”, “You’re so strong”… blah, blah, blah. And it’s simply not true. There are many people who can’t handle special needs kids, and that’s not their fault. There are parents who have to give them up because the care is so much. There are people who bring their kids to the hospital and leave, Moms and Dads that just abandon their family. There are good special needs parents, and not so great ones, just like typical parents. There are single moms that have to work to stay alive, and they have to put their children in a facility or group home because they can’t provide the care. There are parents that have their own health problems, that simply just can’t do it. Their are special needs children that are dangerous to themselves or others and the family can’t keep them around their other children. People have to make hard decisions sometimes. They aren’t bad people. There is a limit to what one can endure, more than what one can handle.
Now I’m a disabilities guru. In high school, I started by volunteering at a group home. I began college with a major in special ed. I started in direct care at the National Center for People with Disabilities, then PRALID (People Rebuilding and Living in Dignity-the agency targeted at brain injuries), moved to a medical liaison for a group home and eventually became a Medicaid Service Coordinator (basically a case manager) at the same agency. I’ve worked in Special Ed as an aide and a teacher. So, trust me when I say I understand disabilities. I would rather hang out with people with disabilities all day, you couldn’t pay me to teach general education. But, what about being a special needs parent? Well, I was fortunate, I actually was built for it. But nothing could prepare me for me a mom of a kid with a traumatic brain injury. Traumatic is the key word. Now, I can’t speak for other moms, but I think I would have been able to handle it if he were born disabled. If that were the case I would of had time to adjust, I wouldn’t have known a different kid, I wouldn’t have been so fucking traumatized. But, as soon as it happened I went into work mode. I advocated for other people, I’ll be damned if my kid wasn’t going to get everything he needed. I transitioned seamlessly, this was my destiny.
Everyone like to compare special needs moms to superheroes. Here’s the thing, we’re just moms. They are just our kids. We might have to hook our kid up to a tube to eat dinner, but we still make sure they eat. We still just take our kids to doctor’s appointments, there’s just a lot more of them. We still want our kids in clean clothes, teeth brushed, and their hair combed before they go to school in the morning, We hope they have a nice teacher, that they will make friends. All parents do what they can to make sure their kids stay alive through the day, so do we. And we worry. Man do we worry. Maybe that’s what separates us. We have to worry they won’t have a respiratory emergency, catch a virus, have a seizure. We worry they will never fall in love, never make a friend. We worry about what will happen to them when we’re gone and can’t take care of them anymore. We worry every time the phone rings and we aren’t looking straight at our child. Everything revolves around them-but don’t typical families usually revolve around the child that causes the most worry?
And I do have to admit this: you have to love them just a little more than your other children. When your child can’t say, “I love you”, when you can’t get joy out of watching them score a winning goal, when they can’t make you a painting in art class, you love them anyway. It’s never a love that’s hard to find. You don’t realize someone’s mere existence can settle your heart. Taking care of them is so. much. work. It’s all consuming. I missed so much work, my other kids birthday parties, being at the hospital with a newborn at home. It’s physical labor, office work, mental exhaustion. It is suffering on earth watching your child not have a “normal” life. But, it just becomes your normal, because after all, you’re just a parent taking care of your kid.
I’ve never been a superhero, just a mom that loves her kid.