Autism, Brain Cancer, and “Would you rather…”
I am almost 100% better, bronchitis is something I get about four times a year and it wrecks me. My lungs are in rough shape from my car accident a few years ago! Anyway, I have been trying to think of some great amazing topic for my next blog- but that’s no fun. I rather just write what comes to mind. I hope you are all doing well, and thanks again for reading!
After my first few posts a lot of you have asked me questions to still get to the bottom of why I “care.” I’m not real sure why it is such a shock that I care very much about Autism and bringing about awareness…? It’s sad how people assume that since I have no personal connection to Autism, I “must be trying to gain something from it.” Untrue! Just because I’m not a parent, or have a family member with Autism, does not mean I don’t get it. Working fulltime with Autism provided me 8-9 hours a day of interactions, and many parents don’t even get that much time with their children because they get home from work late and their child goes to bed three hours later. I have seen the ups and downs, and I have seen families torn apart by financial burdens and not knowing where to turn. Parents these days, ESPECIALLY parents coping with Autism, don’t have a ton of free time- so why not do the advocating for them? You would be shocked how many people look at me as if I have six heads when I say I advocate for Autism. I often hear “oh, the slow kids?’, or “do they do crazy Math?!” Ohhh society. It’s interesting and frightening how many people will give you every detail of Kim Kardashian’s pending divorce (no offense Kim, people love you, keep rockin it!), but they don’t have a clue how prevalent Autism is, or what exactly it is. Why am I not seeing popular TV shows air episodes where Autism is given a spotlight? I personally am tired of seeing a few TV specials air shows about how amazing high functioning Autism is. Why not show the low functioning AND high functioning? Show the nonverbal kids, the tantrums, the biting/hitting/kicking, and the stereotypical behavior. I just do not think our country will “get it” till they see how severe it can be. Show the parents who sleep three hours a night and are working two or three jobs just to afford medical care, show the siblings who are having a hard time coping. THAT is the kind of stuff the world needs to see, not reality shows about partying.
So another popular question which I have just recently decided to address during a few interviews is “and..why did you pick Brain Cancer to advocate for as well? Autism and brain cancer?” Just over a year ago my Dad was diagnosed with brain cancer, at just 52 years old. Ever have something happen that literally makes you feel like your world stopped turning, but everyone else keeps going? That’s what this was for me. My Dad is one of the toughest, strongest people I have ever met. He owned a fantastic successful business, he raced Motocross for Honda, he could do it all. People absolutely love him, and I have NEVER heard him raise his voice or yell. Never ever. Honestly, I didn’t really know how to deal with it, so I chose not to discuss it. The few people that knew about it begged me to make my platform brain cancer, but I just couldn’t. I NEVER want to come across like I am seeking pity, or advocating for something that will directly benefit me. I have been seriously affected by this, but I don’t know much about it. I have not been directly affected by Autism, but love learning about it and have a passion for it- see the difference? My Dad had emergency surgery to remove a tumor the size of a grapefruit. Sadly, they were not able to remove the entire tumor from his brain, and were forced to leave part of the tumor. My Dad goes to chemo twice a month, and it is incredible to see his spirits are still high. Sooo…that is why I also chose brain cancer as well, it is becoming more common and several doctors are looking at cell phone usage…
You know those stupid “Would you rather” games? Would you rather be deaf or blind? Never have to eat again or never have to drink again? My brother and I play that from time to time, and I was thinking about this today. Would you rather have a child with Cancer or Autism? Let me tell you, I rather have a child with anything BUT Autism. Sounds extreme? Let me explain why. With cancer, or diabetes, etc., you can have a test or a CT scan, etc and your doctor will say “Okay, you have _____ and it is stage _____, the prognosis is ______ and this is the treatment _______. We will run this test, start you with this medicine, come back in four weeks.” With Autism, parents are like rag dolls going back and forth for a diagnosis, then a second diagnosis, maybe a third just to be sure, then a genetics specialist, a developmental pediatrician, a neurologist, it goes on and on. Each doctor always has something new to say, and before you know it you have compiled a list of 20 different potential problems and not a clue where to start. It’s overwhelming and it seems like if a child is slightly delayed, they are immediately slapped with the label of Autism. I cannot tell you how many parents I have met thought for a year or two that their child had Autism, only to find out the child was simply delayed. Anyway, with Autism, parents will just hear “Your child has Autism…” then crickets. There is no prognosis, no “stage,” no “this is what’s next.” It is 100% a mystery. There are great days, and there are terrible days. With cancer, etc there is a start and there is an end, and a lot of details in between. Autism does not have a known start and end…with Autism, there is a start and then a million unanswered questions. Every day is trial and error, some things work for awhile and then suddenly stop, sleeping patterns are thrown off and one of the WORST parts- many times the child cannot even communicate what hurts or what is bothering them. There is no knowing what will come next, and that is terrifying. Every disease and developmental disorder is awful, but I really cannot think of anything more stressful, frightening and heart breaking as Autism…can you?
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I unfortunately have to say that my son, at the age of 3, was given a formal diagnoses of moderate-severe ASD August 9th, 2010 – and one week later was diagnosed with a rare form of kidney cancer which also spread to his lung.
Autism is scary – the future is unknown and you have such high hopes and dreams for your child it is very hard to grasp and grieve the loss of the child you dreamed of. But, also, to be told that your child has cancer, yes it has a stage, a prognosis, a treatment, all the things you said…but cancer is cancer…it can come back at any point in time…
I love my son more than words can ever say and am thankful he is still here with me…but each day brings forth a new struggle, a new waiting game, a new acheivement or success, a new fear…and no matter what, each day is a struggle, whether it’s tackling a new goal with his IBI team, or waiting for the test results of his latest MRI to make sure he has not relapsed. Take it from a parent that has been on both sides of the fence – autism and cancer are not something I would rather my child have.
@Kaitlin – you are an inspiration kaitlin. thankyou.
When you have a child someday, you’ll know that autism is not comparable to cancer. I would NEVER in a million years want to trade places with someone whose child has cancer. Whether or not there is a prognosis and clear path is irrelevant. Autism is not going to kill my child. I LOVE my child so much and I love her exactly how she is. Of course I will work to help her overcome some of her difficulties, but autism is not a death sentence. There is a lot of beauty, fun and love to be had despite some of the hardships autism can bring. But cancer, I don’t know how I could cope with that. If I lost my child to an illness like cancer I don’t think I would be able to go on. She and my husband are my world. Autism is not my daughter and it isn’t going to take her away. I would never wish to trade places with someone in a situation facing the possible loss of their child’s life, or even pretend my situation comes close to that. NO WAY. NEVER. And honestly, I don’t really even like that you find it appropriate to say autism is even close to that caliber. It may be hard, but I have her with me and that means more than anything in this world.
I wouldn’t care if my child had autism or brain cancer. I would love him/her just the same.