Testify

Ok, so it's been a while.  Sue me!  Life has been crazy busy.  (HAHA!  I just misspelled busy as BUSTY!  My life definitely has NOT been that!)  We moved during the summer, just before the school year started. 

So anyway, yesterday we went to the state legislature to testify before a sub-committee on the needs of our kids.  Brought M with so they could put a face to the name/file/reality of this, as they aren't just random bits of information.  They are beautiful little people with limitless potential.  As we were waiting for our turn, I jotted down a few notes that basically became my testimony.  Here's a rough transcript (at least until we got to a few questions).

"We are here on behalf of our children J and M, and to ask for more consistency, transparency and understanding when it comes to caring for both of our children, both of whom have special needs.

Quick background - J was born at 36 weeks.  At about 4 months old, he was not meeting all his milestones, so we took him to our doctor.  Six years and countless tests later, we have learned that our amazing boy is legally blind and has epilepsy.  he cannot talk and has difficulty walking.  He cannot feed himself and isn't' potty trained.

M was born at 24 weeks.  If it can happen to a preemie, she did it - bowel perforation, brain bleed, eye and heart issues, etc.  As you can see, she is dependent on a tracheostomy to breathe, but also a g-button for food and regular monitoring of her shunt for her brain bleed and oxygen saturations.  When we as parents are not available, she needs to have professional nursing care, as we cannot just 'take her to a neighbor' as has been suggested.

As parents, we want to not only provide what's best for our family, but also continue to be productive members of society.  however, all too often recently, it seems to be more so a choice of one or the other, both not being logistically possible.  

I am a teacher and my husband is a sheriff's deputy, so you can imagine our schedules.  neither of us works a typical 8-5 Monday-Friday.  D often has to work late, unexpectedly to work accidents, fill out reports or answer emergency calls.  

Not only do I teach teenagers, but I am also evaluated on my professional development and involvement in the schools.  This often means taking a course to learn new technology - SmartBoards are the latest, working a track meet or sponsoring a co-curricular club.

These not to mention our personal businesses, all of which we do to try and make ends meet and provide for our children.

Yet we often meet resistance when trying to fulfill the professional duties.  For example, just before Thanksgiving, I was asked about working wrestling meets and basketball games, but i could not.  The managed care company for M says they will not approve any additional nursing hours since we are in the middle of our certification period.  So not only is this costing us money we could put toward the betterment of our children, but it is also potentially hurting my job evaluations.  We are left wondering if instances like these could cost us our jobs down the road.

We know these services are not cheap.  But we are here to put a face to the need, to show that my children are worthy human beings, not just dollar signs.

At the same time, it is not only cheaper to have children at home (versus in an institution), it is also better for the children, the parents, the family, and the community at large.

By having my children at home, we are able to constantly and consistently work on skills - feeding with J, mobility for M.  Elsewhere, work on these skills might be limited to 30 minutes twice a month for example.  They also receive the love and attention of their family, something every single child deserves.

As parents and extended family, we gain skills, understanding and empathy by having our kids with us.

Our community gets exposure to differences.  As we all know, we don't live in a cookie-cutter world.  We are not all the same.  And they only way we learn about and come to accept these differences is by being exposed to them."

The state Senator then asked a few questions about nursing not being covered during physical therapy sessions or the transportation to and from.  I proceeded to tell them that while extended family members may transport the kids, they aren't qualified to take care of M's trach.  A PT isn't qualified to put a trach back in either, and it has come out in PT sessions before.  Hubby and I went through 6 weeks of training in the NICU before we were allowed to take her home, because if it comes out, you have about 30 seconds to do something before she starts to suffocate. 

Here's hoping someone, especially lawmakers, gains some understanding from our story.

Incompetence reigns supreme

So those of you who know me, know that we've had many issues with insurance coverage for M.  Want to hear about the latest fuck-up?  (and if you have an issue with my language, please just click the little red box up to the right).

Insurance denied coverage for M to go to camp with her nurse.  Nursing company asked for an appeal and what steps needed to be taken on 4/15.  NINE days later, after I emailed to check on the appeal, we were told that it hadn't started because the MD didn't file the appeal.  Within three business days, and after being put on hold for over 30 minutes and talking to someone who had no clue what they were talking about, MD got the appeal scheduled for the morning of 5/3. 

Fast forward to yesterday, 5/16.  M goes in for a weight check (girl is putting on some pounds now!).  We find out that the morning of 5/3, insurance called the MD to cancel the appeal meeting.  When MD asked to reschedule, they were told no.  MD tried to call back and reschedule again, and they were told that they couldn't since "they didn't start the appeal."  Um, insurance told us MD was the one who needed to start it in the first place!

So after several calls - we called insurance, we called MD, MD called insurance, we called nursing, we start to get things figured out.  But oh no - I can't be that easy.  Because NOW they are telling us that the window in which to file an appeal has passed!  If they hadn't cancelled and refused to reschedule, it wouldn't have been a problem.  Needless to say, this isn't going to fly.  I think Hubby's head about exploded.

I don't know if insurance thinks we are going to bend over and take it or what.  If so, they obviously have no clue about with whom they are dealing.  I'm convinced that every person in that building shares one single brain, and that person is out back having a smoke.  In the meantime, Hubby is looking for lawyers and I am looking for state officials.  Either way, my daughter will NOT be penalized 1) for being disabled or 2) for their complete failure to do their job.

Spread the Word!

So I missed yesterday - sorry.  Kids took precedence!  Forgive me if I blog about the "Spread the Word to End the Word" a day late.

Retard.  Retarded.

Two of the most hateful, and hurtful, words in the English language.  I put it up there with a number of other words that I can't even bring myself to type.  N-word for African-Americans.  K-word for Jews.  S-word for Hispanics.  C-word for Asians. 

Yes, I realize that the true meaning of the the word "retarded" is "delayed."  I do not object to its usage as such.  Delay implies that you will get to your goal eventually.  It just might take you longer.  My children are both retarded in their speech-language skills.  But I can see the growth and progress every single day.  Their communication skills improve noticibly.  They will succeed, just at their own pace.

However, the majority of those who use this word use it as a derogatory term to mean STUPID, DUMB, IDIOTIC, etc.  Two very different meanings.  My children are far from stupid, dumb or idiotic.  And when someone uses the R-word as such, it is beyond hurtful.  You don't know my children (well, some of you do), so using this term in a derogatory way will bring out the pissed-off, short, Polish mom in me.  I will call you on it.  And odds are, I will not be nice.

People who claim that it's "just a word" have obviously never been in the minority.  It hurts.  It scars.  It offends.  it angers. But it also shows that those who use it are somewhat lacking.  If you use the R-word as a slam, you will NEVER reach your full potential as a human being.  You are CHOOSING hate.  Yet my children reach and push their potential every single day, loving everyone they come into contact with (ok, not the nurses when they have to give shots, but seriously...). 

And I'm not asking for top-down censorship.  Yes, this is America, and we have free speech.  You do have the right to say whatever you would like.  But we, as a society, don't have to condone it.  I want to see this word become as taboo as some I mentioned earlier.  No law is stopping you from using those, but if you have half a brain, you know those are simply not acceptable.  And the R-word is not acceptable either.

My children are loving, bright, fun, smart, witty, manipulative, amazing, happy, silly, excited, friendly little buggers.  They reach their potential - will you?

Feeding tubes are normal

Wow.  Been a long time since I've been here.  I swear I've been meaning to make it back, but life just gets in the way.  But as you may know (or if not, you do now!), I have a hard time with March, so let's just get back into venting.

First, kids are good. 

But my main reason for posting today is to bring awareness to feeding tubes.  You see, my daughter has one. 

Now I'll admit that I never knew what a feeding tube looked like until I had M.  I can now tell you the difference between an NG tube (naso-gastric), an OG tube (oral-gastric), and G-Button (gastrostomy).  Ok, so my medical terminology might leave some of you cringing, but I swear I know what I'm talking about. 

I don't want people to be scared.  M doesn't eat by mouth because she has what's called an oral aversion.  She hates it when anyone puts anything in her mouth.  And if you do get something in there, she has no idea what to do with it and coughs, chokes, gags, etc.  That doesn't mean that we don't try!  The girl loves licking suckers, spaghetti sauce, and recently queso dip.  She just never learned how to chew, so no chunks.

Because of this, you might see her with a tube attached to her belly from time to time.  That's how she gets most of her nutrition.  Yes, I was terrified of the stoma (hole in her belly that the tube goes in), but now it's well-healed.  She pulls on the tube all the time.  We clean that area just like you would have your kids brush their teeth.  And her "food" goes through a pump to get it in her belly.  Honestly, based on the way it smells, I'm sure glad I don't have to taste that stuff.  Bonus - she doesn't have to take any of those nasty medicines by mouth!  It all goes in the tube!  It's really just another way for her to get her nutrition.

As I said, I never knew anyone with a feeding tube until we went through it.  Now I've met many.  A former student said "hey!  I had one of those when I was little!"  A friend's little girl, who also has a G-Button, asked where my son was hiding his G-Button - she and M both had them, so my son was the odd-man out.

So if you see us, and M has her tube hooked up, don't be afraid.  It doesn't mean she's going to break.  You can't "catch" it.  She's a happy camper.  Feel free to ask; M loves to show everyone where her "button" is.  Just please don't stare or snicker.  She just eats differently.