The Big Prosthesis Debate

I had a distant family member, someone I only talk to only about once a year, ask recently about a prosthetic for Quiet Tiger.  I was pelted with questions.

"Have you gotten her a prosthetic yet?"

"Why won't you get her one?"

"When will you get her a prosthetic?"

"Don't you think she'll be better off with a prosthetic?"

"They're doing amazing things with prosthesis these days, you know."

People, enough.  

Just stop.

Please!

We are well aware of the advancement in technology in the world of prosthetic devices!  We've even been cornered at a Twins game last year, or was it the year before, from a man sitting behind us who was a Shriner here in the Twin Cities and said he could do something for my daughter.  My response is this:

If we found that our daughter was 

struggling physically with everyday tasks, 

then we'd consider prosthesis 

or even surgery 

to give her more movement in her hand.  

But I haven't found 1 thing that my daughter cannot do.  

I know you think I'm seeing that through a parent's eyes, but its true!  I've found NOTHING!  She can cut her food (sure, steak is tough, but that can be tough for any kid!), she can flip cartwheels better than any 7 year old I've met, and she can tie her shoes beautifully without difficulty. 

I will absolutely not put my traumatized, attachment-challenged daughter through any unnecessary surgeries just to give her more mobility (because she doesn't need it) or to give her a different cosmetic appearance.  I cringe at the idea of taking one of her toes and moving it to where a finger should be.  Then that gives her 2 odd limbs instead of just one.  That's not right, for us.

Her lack of a hand is not an issue.

Yes, we have a 504 written for her limb difference.  Frankly friends, that is more for the teachers than it is for her.  We have had some awkward circumstances happen in music class that make us shake our heads at how teachers handled musical instruments that would typically require 2 hands.  They made an assumption that Quiet Tiger wouldn't be able to do something and didn't even let her find her own way.  It made me cringe.  The 504 ensures that teachers treat her fairly and give her a chance to try things her way, not necessarily the teacher's way. 

And I will say that we had a 3D printed hand back in Texas.  It was given to us by a friend of my husband's who was studying at UTSA.  He took measurements, made one prototype just her size, then made a second, larger one.  But for us, for Quiet Tiger, they were almost non-working.  She couldn't grasp anything and hold anything with the hand.  Sure, the fingers had some movement, but these hands were not functional.  And then we moved.  When we moved, we lost our connection to help to make the hands more functional.  Lastly, I'll mention that with the rate kids grow, they'll outgrow a 3D printed hand very fast, thus our need for 2 of them in Texas.  And getting replacements would be time consuming not only for us, but for the developer.

Let me be clear: I have no issues with families who put their kids through surgeries or who go the route of a prosthetic device.  If that's your family, then kudos to you.  I've cheered friends on for the very same decisions!  I "like" and "follow" many prosthesis companies and non-profits online and on Social Media like Facebook and Instagram.  But what's right for 1 family isn't right for another.  These limb different kids aren't made from cookie cutters.  When and if we ever find that our daughter is struggling physically with tasks, then sure we'll consider trying something that would provide a solution to her difficulties.  Absolutely we will!

But for now, we're all set, we're good, we're thrilled with all she can do and we're excited to see all she will do with 1 hand!  She's "limbitless!"

Our School System Sucks

Our school system is completely whacked.  And that's the most eloquent word to use at this point.

This month, after more school issues came to my attention via school note, I filed an official, written complaint to the Minnesota Board of Education.

I filled out their form stating the school is neglecting my daughter's physical and mental special needs.  The neglect may be willful or completely unintentional, but neglect is neglect.  I wrote a long letter with the description of what had happened this spring at school.

I wrote about 2 instances of pants wetting and soiling while my child sat in her own filth all day long, no one seeming to notice the stench and wetness surrounding her.  Really, school staff?  You couldn't smell the reek of urine?  You believed her lie that she fell into a puddle?  And you really couldn't smell the stench of feces, front to back in both her underpants and leggings, after you told her she couldn't use the restroom in the morning?  That isn't neglect?  Really???? 

I wrote about the 2 instances of my daughter going through the cafeteria line, where her account has been flagged as "No food purchases," due to her food issues (stealing/hording/gorging) and intolerances that will give her some pretty nasty GI issues.  I explained in detail the words the kitchen staff lady told me, "that she is too busy to read all the notes in the computer system and gives food to anyone who lines up for food."  That isn't neglect?  Seriously???? 

Our broken school system, our wonderful Minnesota Department of Education sides with the school that the neglect isn't willful and they had "no knowledge" of these problems.  Liars.  They know!  They've known since the day we entered the elementary school 2 years ago. 

Maybe I should go to the media.  How would they like to see this on the 6 o'clock news?