looks ARE deceiving!

[autiemommy2]

I'm sure that people - both strangers and familiar alike - look at my family and think all is well and normal. On the surface, it may seem that way. You may pass me at the mall and never so much as notice because things "look" normal.

Wouldn't it be nice if you could look at someone and know what was wrong without assuming? I know, I know... invasion of privacy if you want to keep up appearences. But I'm not about that. I don't care. I just wish people would realize that not everything is as calm as it seems. "Just because a duck looks like it gracefully gliding across water doesn't mean that it isn't paddling like crazy underneath the surface!!" So true.

Do I want pity? No. Never have. Do I want handouts? Certainly not! Do I want understanding? Yes. Compassion? Yes!

Just because I didn't look sick didn't mean that cancer wasn't running rampant. And because a doctor wouldn't listen and went based solely off my looks, he ignored me. I had my left lung removed due to cancer taking over.

Now, 10 years later, I am experiencing the same amount of ignorance from doctors - and general public - about my son. Yes, I know he doesn't look sick. I realize he looks happy, healthy, loved, fed, groomed, etc. But he is sick. His brain doesn't work normally. He can't speak because of it... but that's just ONE of his many issues. There are a lot of foods that he cannot eat because his body doesn't know what to do - instead of filtering out what is bad and absorbing what is good, it is confused and turns everything to poison. I struggle every day, every meal, to keep him at a reasonable weight. I work hard at reading labels, checking everything before I buy it, and sit for periods of time begging him to eat. He's 3. He cries because he's hungry. I cry because I can't give him "just anything" without poisoning his little body and making him worse.

He looks like a normal blonde haired, blue eyed cutie pie! He laughs, smiles, plays, hugs, loves. But he's still sick. His digestive tract can't figure out how to eliminate his poop on a regular basis. We've tried diet changes, more fruits, more juices, and lately, medication. Nothing is working. What's the next step? I don't know. And I can't get a doctor to listen to me because he looks normal. He's not running a fever. When he does run a fever, it's not high enough. And I'm so sick of hearing "well every kid is different". Duh! And my son IS different! You can't brush off his symptoms as normal when he's not. It took him 8 hours of gut-wrenching pain and cries - hours on the toilet (until his butt was raw and red) until he finally pooped. It was so heartbreaking that all I could do was cry. There was nothing to do. No fast-acting anything to pull him out of the hell he goes through just trying to poop.

Today is another sick day for him. I have no idea what has caused it but I knew something was wrong. Yesterday afternoon, he slept. He never sleeps during the say unless he's sick. And I was right - he was miserable, but how do you know for sure? He can't tell me. He's non-verbal. He can scream, cry, and give me the most pitiful look on earth, but I still cannot diagnos him. I don't know. After struggling to get him to eat dinner, he finally went back to sleep. When he woke up this morning, I found him lying on the floor in his play room... quietly laying there.... not playing, not making tons of noise, not playing with his toys. He once again, just seemed like he didn't feel well.

Another struggle to get him to eat breakfast. Gave him his vitamins. He immediately went and layed down on the playroom floor again. Yep, sick. I knew it. Damn. It knew it was only a matter of time... and he proved I was right on track with my feeling - he vomited. A lot. He fell asleep shortly after being changed and stayed on the sofa... lethargy setting in even faster. His fever was rising, so Tylenol administered. He refused lunch and anything else to eat and drink. Finally, he drank a sippy cup of juice. Still running a fever, still not wanting to eat. Still wanting to just lay there. Falling asleep again.

But if I take him to ER, ImmediateMed, or even his pediatrician, I will only hear the same thing I always hear... he's fine; just give him Tylenol; if he's not better in a few days, bring him back. All of it crap. All of it based off of looks alone. Of course he doesn't SEEM sick to YOU, but if you knew how he normal acted when he WASN'T sick then you would KNOW my son is ill, not just another kid with a cold! You'd be running tests to figure out WHY. And it infuriates me that no one will listen because looks are deceiving.

I'm missing a lung... and I REFUSE to allow my son to suffer for years or even another day because he doesn't LOOK sick enough! How sick does he have to LOOK for someone to realize that he IS! Sadly, it's not just doctors who think that a little fresh air will cure him. If it were that easy, don't you think I would live outside??? Geez. Pull your heads out of your butts and wake up!!!

LOOKS ARE DECEIVING. This is Autism.

[aurorabunny]

Jul. 11, 2009 at 5:19 PM

((hugs)) I know exactly how you feel.  (In regards to autism, fortunately I have not dealt with the cancer part!)