kid smiling with mom

This is a happy child

The media in Australia this week has been reporting on a tragic case of a 2-year-old girl who drowned in 2007. In most cases, the drowning may have been considered accidental. Tragic. A horrific, freak event. But her parents are being accused of murder because before her death they asked social workers and doctors if it was possible to kill their child legally.

Why?

Their daughter had Rett Syndrome, a genetic form of autism.

Every time I read about a child being killed (allegedly in this case) by their parents or guardians, any child, my heart breaks. It just doesn't seem fair that the very people who are supposed to protect them most in the world caused their deaths. But a special child? A child who will likely need lifelong care and protection? Unfathomable. A child is a child is a child. But causing the death of a child BECAUSE of their disability is just about the most wretched thing you could do as a human being, in my humble opinion. You suck as a human being, my friend.

Sure, I'm extra-sensitive because, NEWSFLASH! I have children with special needs. One of my children will always need 24-hour-a-day supervision. He will likely never, ever live on his own. He cannot communicate verbally. He needs us to be his advocate and protector. And we won't always be there for him, which scares the dickens out of me. But we do the best we can. Why? Because he is our child and that is our job. We are parents first, special needs parents second.

This child's death strikes a nerve with me for more than one reason. It breaks my heart that we live in a world that devalues people with disabilities. It just goes to show you that we have a LONG way to go in terms of awareness. But the scary thing? This happens again and again. People who are misguided kill their children. They claim that it is too stressful to handle a child with special needs. Others empathize with them and they are coddled and everyone gets all riled up about how difficult it is to parent a child with special needs! No wonder they killed them! It's so stressful! And sad! And depressing! They are mentally ill! There's no quality of life! There's no hope! NEGATIVITY AND SADNESS PLUS INFINITY!!!!!!ELEVENTY!

And I'm here to speak for those children. Because their life is a life worth living. I'm here to speak for the little girl in Australia, whose parents failed her and allowed (or directly caused) her death because she was a "burden" and threw a wrench in their travel plans. I'm here to speak for children like Katie McCarron, killed by her own mother because she felt guilty for vaccinating her daughter and didn't want her to be a burden. I'm here to speak for Zain and Faryaal Akhter, whose mother first tried to poison them with drain cleaner and then choked them with wire, because they were autistic. I'm here to speak for Jude Mirra, whose mother stuffed a lethal dose of prescription drugs down his throat, because she wanted to "end his suffering." I'm here to speak for Rylan Rochester, whose mother suffocated the infant because she feared he was autistic and better off dead than being a burden to her husband.

I'm here for the countless others -- hundreds of others -- around the world, killed at the hands of their guardians because of fear. Fear of parenting a disabled child. Fear of burdens and life changes and suffering.

Guess what? Parenting is difficult. Parenting a child with special needs is difficult. Having children puts a damper on some of your life plans. GET OVER IT. Grow up and be responsible. You are a parent. You are supposed to make sacrifices for your children. Just because they are disabled doesn't mean you get a free ticket to complain about how awful and rotten and difficult your life is. Your children are not a burden. Euthanasia of a disabled child is never, ever okay.

Does it sound like I'm judging them? GOOD. Because I am. And don't say that I don't know what it's like to be them, that I have no idea how it feels to be in their shoes, because I do. I go to countless therapy and doctor's appointments each week. I have specialized equipment in my home. I struggle to get my child to eat and take medication. I have nights that I don't sleep at all. For weeks in a row. I struggle with discipline. I have no idea when my kids are sick. I have padlocks and alarms on the doors so that my child doesn't escape. I sleep lightly in case he wakes up and wanders away in the pouring rain at 3 a.m. naked. Again. We have public meltdowns and can't eat in some restaurants anymore. I live it each and every day. And still, my children are not a burden. Because they are my children. And I'm a parent, just a normal, everyday parent, doing what I'm supposed to do: Loving my children unconditionally.

If you are a parent of a disabled child and you are having a difficult time, there is help and there is hope. It is challenging but you can do this. You can raise your child with dignity and respect and make their life a life worth living.

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Image via Marj Hatzell