What Is Wrong With Him?

My son has both a rare disorder and Autism. I have been exceptionally candid and frank about this in all my work. He is going on twelve years old which is about a decade more than anyone thought he would ever have lived. We are not guinea pigs so we have not been studied and therefore no one really knows why.

And trust me there is no funding for families with children with rare disorders. This country has abandoned these children and families. If you ask for services they try to take the child from you and that is most certainly a death sentence since no one actually knows the diseases but he specialists and the parents. I believe my son is the only child in our area that has survived the disease. It is not curable but it is treatable every single day.

And everyday I get up and I have to give medicines as if I am nurse. Which no one trained me to do but I had to learn on my own. I have no respite. So everyday when I am working and writing here I have not had a break. I haven’t had a day off in almost 12 years. There is no babysitter so I can’t get dental care or healthcare. Quite literally I can’t even have my hair done because I have to watch my son and he can’t stand the smell of the chemicals in the beauty parlor. And this has lasted over a decade.

I home school. I am the only school that will teach my son. I am the only one qualified to care for him. Quite literally, I can’t allow him to suffer certain stress. It is an unbelievable existence and I am all alone doing it. What has been even worse is for the past two years I also provided end stage cancer care for my Mother. She died. No grief allowed as I have had no time for it.

It often occurs to me who else besides me could endure all of this? I know of no one. Even my own family couldn’t watch my child while my Mother was dying. If I get sick I have to get up and still medical manage my son regardless. But I don’t want your pity. I don’t feel sorry for myself. I often wonder how long any person could persist in this situation without any financial assistance or a break but I am running up on twelve years now so I guess I will just continue.

It is a cold cruel heartless world out there for us. Because even after twelve years I have people come up to me in front of my son and ask me, “What’s wrong with him?”. My son is fully cognitive and just can’t speak. It is very insulting to him.

You probably don’t follow me on hubpages but I can be a spite fire. Sadly the only thing I have for the pain is writing. And it takes every bit of strength I have left in my body not to answer, “You mean what is wrong with you?”!

And then the next question I have would be, “And what is wrong with society that it can ignore children with rare diseases and Autism?”.

“What is wrong with this country that it ignores it’s disabled children and denies them funding for war?”.

“Why hasn’t Hollywood done anything to help the plight of the disabled in this country from their billion dollar mansions?”.

“Why haven’t the Kennedy’s done anything to help the children with Autism?”.

These are all really good questions which no one wants to answer but instead claim that something is wrong with my child. So then I hold my tongue not to ask…

“What is wrong with you that you would even ask that question?”

And then I stop myself from staying, “Take a picture it will last longer!!” Because people stare at my child frequently when we are out in public as they would love to see the cripple shoved back into the closet like in the 1950(s). 2011 gays out of closet so more cripples can get shoved back in. Where’s George Clooney or Ellen on this one? How about Oprah?

We may have a black president but we have no civil rights. And the disabled of this country are treated so incredibly bad it is incomprehensible for the average person who doesn’t go through it each and everyday. It is a marathon for the child and a marathon for the parent.

I usually look at the person and just tell them my son suffers from a broken heart. And that all he wishes to be is loved in a society that steals funding from children with rare disorders, medical complexities and Autism for their own greed. And then I tell my son it is ignorance and let’s move on. We are thick skinned now. So thick you could probably stab me and I would bleed. Because everyday is just another day like this and nothing ever changes.

If you are a parent of a disabled child and someone asks you what is wrong with your child. Answer a broken heart because they are ostracized from society, stared at, exploited and treated horrifically by their government. There is nothing wrong with your child, it is government and society which are broken.

I hope I didn’t mince words on this hub too much.