Friday, May 2, 2008

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!~ :)

6 comments:

Candace said...

I completely understand. My daughter is dealing with dysphasia as well. Please keep us updated on how this therapy goes.

C said...

Preach it, Melanie!!

I'm right there with ya, sister.

How goes the fundraising?

Hugs and Blessings on all fronts.

Jacolyn said...

UGHHH!! I completely understand! Why do the "professionals" not help us!!!! Anyway, I hope it helps...keep us update. (We will get an e-stim machine for Grace on Monday!

Justinich Family said...

I feel ya girl. Me and other moms in my face to face group here at home have the same complaint all the time. Parents are the best resource, nobody in a professional capacity seems to want to tell you anything.

katze1976 said...

This is so true. I don't know if therapists are too overworked to offer much advice about other therapies to work on or what. And the doctors and nurses seem to ignore any newer therapy or treatment - they only stick to the old school tried and true boring stuff they've always done...unless it's a brand new medication out on the market; then they push you to take it. Does anyone ever feel they have to be their childs doctor, nurse, therapist, teacher, etc.? I do - so why do I have to pay a professional?! It becomes exhausting at times.

Anonymous said...

I know exactly where you are coming from. I have the same struggles here with Kelly. If it were not for the CP website, and blogs like this, I would not know about half of the therapy available!! Very annoying. You are doing a super job!!
Janette
Mom to Kelly
West Syndrome, CP
18 months old and full of stuff