Why Did No One Tell Me...

So, why is it that for whatever unknown reason, no one....I mean NO ONE has ever said "Hey, I know you have a child that has swallowing issues, have you ever heard of......"
NO! Not even the doctor who did the modified barium swallow test...nope, instead when Daniel aspirated.....it was G-TUBE. We have been going to some form of speech and/or occupational therapy for years....and no one has ever said, "Hey....have you heard...."

So, I'm sitting in Daniel's therapy room at speech and just finished telling his augmentative therapist about his failed swallow test.....and I look over and see a flyer sitting on the counter, I stand up, grab it and read: "When You Can't Swallow" Questions and Answers about treating Dysphagia with Electrical Stimulation.

I thought to myself, hey wait a second....that word was in Daniel's diagnosis of PMG. (I wasn't sure exactly what the word meant, but I knew it was something to do with swallowing!) I start to read through it as Ms. Pat is working with Daniel, and I was floored. What the heck. I can't believe no one has said anything about this or even said "Well, maybe it would work!". UUUUUUUGH.

So, the next words out of my mouth as I hold up the flyer for Ms. Pat to see......"Why isn't Daniel doing this?"

Ms. Pat: "Well, we can."

Sigh..........I am just frustrated lately....it seems if I don't happen upon these types of things on my own, or if I don't have my nose buried in special needs catalogs, or doing "google searches" for special needs information, or yahoo support groups, word of mouth...that we would go without for so many things with Daniel. It just seems like we have to pry information out of organizations, or people, doctors to get Daniel further in programs that will help him.

So, when we get back from Florida.....we will see about getting Daniel started with this new form of therapy to help strengthen his throat/cheek muscles. Now, it might not do anything...but if it doesn't hurt, and it doesn't stress him out....WHY AREN'T WE TRYING IT? why was the first thing out of the doctors mouth G-TUBE?? Why not, "Hey, try this therapy for six months, we'll do another modified swallow test, see where we are then, to decide if a g-tube is needed?"

If you are a parent new to dealing with a special needs child, one thing to remember....YOU ARE YOUR CHILD'S ONLY ADVOCATE...YOU ARE YOUR CHILD'S VOICE......YOU MUST RESEARCH, YOU MUST ASK QUESTIONS, YOU MUST KEEP TALKING UNTIL YOU ARE HEARD, YOU MUST BE STRONG AND STAND YOUR GROUND, YOU MUST NEVER EVER GIVE UP!!!!

ok I'm done with the rant!~ :)