I found the following post in HealthKicker, and it really made me wonder, “Since when did taking care of a special needs child become a competition?” It is enough hard work to raise a healthy typical child, but it is even harder raising a child with special needs. It doesn’t matter what the disease is, those parents feel the heaviness on their shoulders. I think it is very offensive to say that one disease is worse than another, as well as saying that parents who have autistic children should stay quiet.
One must realize what are the consequences of the particular disease or disorder. Paying an incredible amount of medical bills is no fun by any means. Not being able to leave your child for a moment is not considered a “cake walk” either. Having surgery after surgery, due to illness or other disabilities can not be considered a happy house-hold as well. All parents who are raising these children have their own demons to deal with.
The post is below and I will insert my comments in red in between paragraphs.
Friday, 13 August 2010
So constantly on Xanga I am bombarded with people talking about their autism, their kid’s autism, autism in general, blaming vaccines for it, and pretty much everything else you could ever possibly say about autism. You know what I’m getting so fed up with? People act like being autistic is the worst thing in the world. If your kid has autism and it took a long time to diagnose that there was even anything wrong with him, then it’s probably not that bad. Stop assuming that autism is like a death sentence. It’s not. For most people it’s a small set back. Severe cases do exist, but let’s be realistic here. Your child may have some emotional issues and not talk much, but they’re F@#$ing alive and healthy. Be happy about that.
Autism is not just a small set back, and yes it can be a death sentence as well. To read about how serious it can be check outLives lost to Autism. Also, in what part does “acting like” show that parents with autistic children want everyone to believe that they have it “worse”? It takes a long time to get a diagnosis b/c the testing places are so overwhelmed that they often give an appointment in 2 years. Furthermore, most autistic children have chronic medical conditions as well.
Just to give you guys some perspective, I’ll inform you of some diseases and abnormalities you or your children could have had that are far worse than autism.
1. TAY SACHS
I, personally, am a carrier for this disease as I am an Asheknazi Jew. Tay Sachs is a genetic abnormality that usually only presents itself in populations of people who are decendant of one small gene pool. Jews, Cajuns, and I think one French-Canadian group are all known to carry these genes. All the children that I have are going to have to be tested for Tay Sachs before they are born. Tay Sachs causes nerve cells to distend and it results in basically the complete deterioration of the body and mind. I’m pretty sure the mortality rate for Tay Sachs is 100%. Children born with the disease show symptoms at the age of six months, and are almost always dead by age four. This is not a fun way to go at all, which is why I have to have the genetic test for it done on all my children while they’re still unborn. Tay Sachs causes deafness, blindness, inability to swallow, paralysis, and then death.
Amber Hartland, a 6 year old Welsh girl who died of Tay Sachs
What’s “worse” is relative. Tay Sachs and Leukemia are deadly diseases. But if you could stop for a moment being so harsh, and see what the families with autistic children go through, then you could see that it is a terrible situation as well. Just for your information I am not undermining the seriousness of these two diseases that you mentioned, but I believe it is unfair and highly insensitive to say that just because autistic children don’t die young that they are in good shape.
I’m pretty sure anyone reading this should know what this is. It’s cancer of the white blood cells when bone marrow produces abnormal white blood cells that not only do not function properly, but they crowd the blood stream and prevent the healthy blood cells from doing their job. Acute leukemia is the most common in children. It grows quickly and spreads like wildfire. Symptoms of this include easy bruising and bleeding as well as suppressed immune function. Flu like symptoms and neurological issues can also present themselves. Leukemia is a cancer and is thus treated with chemotherapy and/or radiation. For those of you who have never spent time around anyone with cancer, this is a horrendous process that is very hard on the human body. In essence, you are injected with enough poison that it hopefully kills the cancer without killing you as well. It causes fatigue, hair loss, and prevents the maintenance of rapidly growing cells on your body. Mouth sores, heartburn, and all sorts of digestive problems occur because of the effect on the rapidly growing cells.
Unknown girl with pediatric leukemia
One thing about autism, and the families affected by it, is that we stick together. We exchange ideas to help one another. So if you are sick of seeing this disorder get so much attention, it is because we created it that way to make our lives easier.Why don’t you start your own networking with other parents dealing with the same issues you are dealing with. Why don’t you go and lobby Congress so they can pay more attention to the disorder that you think is worse.
You see autistic parents go out and work hard to create awareness. Perhaps that is what you have to do to get more attention to whatever cause you feel is worthy. Being realistic and being harsh are two different words with two different meanings, and using foul language doesn’t make your quest more successful, or more noble, either. So why not acknowledge that we are on the same boat going in different directions in a very choppy sea.