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?

Reflections on 6 Years

No one really reads blogs anymore.  I get that.  But writing is an outlet for me and I don't do enough of it for my own sanity.

This week, today actually, we celebrate (but that's not the right word) 6 years of having Quiet Tiger in our family.

A few years ago, I did an experiment with her Gotcha Day.  I didn't celebrate it.  Not a mention, not an extra hug, not a special cupcake, not a gift.  Nada.  Anyone who has followed my blog long enough knows that trauma doesn't tell time.  QT's brain does remember that traumatic day when she was ripped from the orphanage, the only home she ever knew, and was placed in my arms.  For her first few years home, she'd start acting out days before her Gotcha Day.  So, a few years ago I decided not to celebrate it and see what happened.  Same old, same old.  She acted out.  Her brain remembered.  It did then and it still does today.  She has been going from rage to manic as I write this [draft started about 1 week to go before her actual Gotcha Day].

I don't plan to celebrate today either.  We're still dealing with way too much RAD to think about celebrating this day.

#@$%@#^@*&%#^*

This is not the life I pictured for us.

Instead, I'm reading through all my old blog posts from China.  You can go to the list on the right and search for this date on May 2012 to follow along.

Oh, Brooke!  You were so naive!  Naive and stupid!  I regret those writings now.  Almost every word.

Wow.  The signs of RAD were there the very minute I met my girl in the hallway waiting for the Civil Affairs Office in Xi'An, Shaanxi to open for us.  The then quiet, but maniacal laughing.  Then the complete disinterest in any person, including the nanny whom she knew.  Ambivalence.  No eye contact with anyone at all.  The rocking in a chair while staring blankly out the window while I signed mountains of paperwork.  The rocking and banging her back and then her head, hitting her skull HARD on the door to the office.  All at 22 months of age.

I remember each and every minute of my 10 days in China and the RAD signs were everywhere like flashing neon lights burning directly into my retina.  I knew it then; I just dismissed it as grief at her life taking a drastic turn.  I had hoped and prayed that things would get better with time and with love.

Nope.  If love healed, it would have healed the moment I first held her hand in that hallway.

Sigh.

We're still doing the program that we learned at the Healing Hearts Camp last year.  The progress we've seen is minimal at best.  We've officially decided to fork over a check with a lot of zeroes this August for Neurofeedback Therapy.  Our hope is that starting just before school starts, then continuing on into her 2nd grade year, will help those brain waves even out at a time when her stress is at an all time high -- the start of the school year.  Right now, those brain waves are just all over the place and nothing we are doing is working to get her regulated.

On this 6th Gotcha Day, May 28, 2018, I seek your prayers for a summer that we can all enjoy (as vague as that may be because even I don't know what that actually means for us anymore), and that the Neurofeedback we begin in August will be a permanent help to her, not a waste of our resources and efforts, and that it does the trick to get her moving forward in her healing. 

I Want Off the Roller Coaster

For RAD kids, it's very typical for them to have a few good days here and there.  Some of my RAD mom friends even report good weeks on end.  Weeks.  That, I cannot fathom.  It makes me shake my head.  I doubt we'll ever get there.

Two weeks ago was Spring Break.  We didn't do anything.  We didn't go anywhere.  We just stayed home.  I kept up with homeschool for the boys while my daughter played with toys in the room with us.  Every day, any time I tried to read anything to my oldest, my daughter would start being obnoxiously loud with her toys.  Banging, crashing, pounding.  That was the least of her behaviors, but when redirected to a strong-sit or something, she'd rage.  Day after day.  How dare I have the audacity to expect my 7.5 year old to be quiet for 20 minutes while I read something for school?  And then to have to deal with her raging self, holding her down so she won't hurt herself or hurt me.  She tried and tried.  I wanted to put her into her room, but that's exactly what she wants.  She wants to be alone, to not have to interact with people, more importantly, not to have to be subject to a parent, her mom, in charge of her whole entire day.  So, she was next to me raging.  Day after day.  Interrupting our schoolwork.  Making us have to skip subjects and just call it a day because none of us could think straight. 

When she went back to school, I was relieved.  I practically danced the whole way down the street to our house after the bus picked her up and whisked her off to school for 8 glorious hours!  My smile returned.  To my surprise, she came back relatively happy and well behaved.  Not perfect by any means, but no raging, that's for sure.  She was almost pleasant each day of the week.  She commented how she enjoys being a happy 7 year old.

It never lasts.  It never, ever lasts. 

One week of decent behavior led to a weekend of wetting her pants and raging and maniacal behavior for her brothers while we were out at a business meeting. 

RAD moms, help a girl out.  How do you find, and more importantly, hold onto hope when it's a constant roller coaster like this?  I know the Biblical answer to my own question.  I do.  And that should be enough.  Period.  But I am so done.  I want off the roller coaster!

I am the Parent of a Child with a Mental Health Disorder

I am the parent of a child with a mental health disorder.

These shootings are hideous acts that leave me stunned because I think to myself, in another time, my daughter could be the one inflicting harm on her peers.  I pray to God that it would never, ever happen!

I am the parent of a child with a mental health disorder.

We have documented diagnoses.  Help is hard to find.  Qualified help is nearly impossible to find.  We have seen a handful of experts.  Her doctors past and present, psychologists, psychiatrists and a team of attachment therapists.  We have tried medications.  We have tried therapies.  We have changed parenting techniques. We have had her brain scanned.  We have spent thousands on her mental health care.  And to date, nothing has worked to cure her, to right her damaged brain.  We continue to see her spiral downward.

I am the parent of a child with a mental health disorder.

I have reached out to our county for assistance.  I ask what they can provide, what services are there to help our family.  They only point me to a weekly support group of other parents led by zero professionals.  They send me leaflets defining the disorder.  I do not need further definition.  I’m living it.  Every single day, I’m living it.  Our county is of no help.

I am the parent of a child with a mental health disorder.

Over the last 2 years I have tried with all my might to educate our school about my daughter’s issues, as her behavioral issues rise and rise in the classroom.  I have fought for help via a 504 Plan, which offers little help.  I fought for an IEP evaluation to show that my daughter qualifies for help with her documented diagnoses.  The school insists that her behaviors are on par with her peers, that “all kids do that,” and that she is "just fine academically, so there is no need to worry about her behaviorally."  They insist that my daughter’s behaviors are all at home and they are completely blind to the behaviors she dishes out at school.  And yet she continues to spiral downward.  My concerns have never been heard, my concerns are swept under the rug.  The school district is of no help.

I am the parent of a child with a mental health disorder.

The road I walk is lonely.  I have to fight to be seen.  I have to fight to be heard.  Yet I am invisible to most.  I am exhausted from fighting to be seen.  I am exhausted from fighting to be heard.  I am exhausted.

I am the parent of a child with a mental health disorder.

Today’s issues are multifaceted!  It’s not all about guns.  It’s not all about politics and our political leaders.  It’s not all about proper parenting.  It's not all about loving more.  It’s not all about just one thing.  Mental health disorders are at the core of the issue.   I can attest to it.  Because I am living it.  And I pray one day we can cure it because these shootings have to stop.  

I am the parent of a child with a mental health disorder.

IEP Fail

I'm officially throwing in the towel.  I'm waving that white flag.  I'm throwing the fight.

Because I just don't have it in me anymore.

Today we had another meeting with the school and district professionals (I use that term loosely).  In short, they don't see any need to provide additional services for Quiet Tiger because she is performing well "academically."  And I am giving up trying to get them to understand.  I am giving up trying to get them to offer us help within the school walls.  I am giving up hope in our school and their understanding of behavioral special needs.

Wait, I thought you had a 504 Plan for that.  

Yes we do.  

But a 504 Plan does not include any unique, specific help or benchmarks or goals for a student to attain.  Our 504 just offers some accommodations the school can offer and it only gets reviewed once a year. 

So, what are you asking the school for?

Frankly, friends, all I want is a para educator to sit next to my daughter all day long at school to keep her on task and to make sure her behavior, her interactions with others are respectful.  That is only provided with an IEP.  And as we know now, according to the district, she doesn't qualify for an IEP.

As with every year, Quiet Tiger's RAD behaviors rear their ugly heads during the school year.  In addition to all the crap we deal with at home that isn't school related...

In pre-school she:

• Wet & soiled her pants at home
• Damaged school books at home
• Destroyed carpet at home
• Put holes in drywall in her bedroom at home

In kindergarten she:

• Wet & soiled her pants at home
• Broke her glasses (which were to stay at school) on the bus ride home
• Went into 3 other kids' cubbies and stole items from their backpacks at school
• Lied about not having breakfast at home so she could eat a hot breakfast from the school cafeteria (which we do not pay for)
• Stole food at school
• Checked out a library book and "lost it" somewhere (never came home, never found at bus company)
• Claimed illness so she could go to the nurse's office instead of doing school work

In first grade she:

• Wet & soiled her pants in public and at home and at grandma's cabin
• Wet her pants in the classroom
• Stole food at school
• Stole items from classmates at school
• Bullied/controlled younger student on playground
• Went to another area of the school to threaten an older student and demanded her to give her a toy from her backpack

RAD.  RAD.  More RAD.

Only the school, the district doesn't see it.  They look at me and treat me like I'm crazy.  I've never claimed to be sane (right, Connie-chan?) and the Lord knows raising a RAD child has destroyed me.  All of me.  But if we don't get help now, these behaviors will only get worse and our daughter's future looks very, very scary. 

And I don't want that for her.  Her story can't end like that.

Our advocate didn't like the IEP and advised us not to sign it, which we didn't.  If we wanted to fight, we could ask for an outside evaluation from someone who understands RAD, at the expense of the district.  But I'm tired.  I'm done.  I don't even want to get out of bed in the morning.  I've no fight left in me.

For now, I'll just keep documenting all the happenings that I know about, but that's just the tip of the iceberg for sure.  Our advocate thinks that as we continue to document, the school will eventually begin seeing the pattern of RAD behavior and realize that she's not going to "outgrow" it.  But for how many years must I document for them to open their eyes to see?

Oh, it's beyond exhausting.

I'm so saddened by the public school system.  I never used to be.  My husband and I are products of public school.  I'm very proud of my education.  My oldest went to public school K-3 and we only switched to homeschool because of Jay's job change, a pending move during the school year, and all the rigmarole with a school 16 miles away from our temporary living situation.  I had very little against the public school system.  Until now.

People my age like to blame parenting on today's millennials and all their "issues," but I can attest with my own experience these last 2 years that the schools are equally to blame, if not moreso.  Our school speaks of Respect for Community. Respect for Others. Respect for Property.  And Respect for Self.  Sadly, they do not practice what they preach.  There are no consequences for behaviors, no respect for authority, and no help for families in need of help for kids with behavioral diagnoses.

It's sad.

In the meantime, we'll bite the bullet and fork over a big check to get her the Neurofeedback Therapy that can work quite well for RAD kids.  Maybe that will help her behaviors at school and at home.  Maybe then we can she heal and we can meet the real Quiet Tiger.

Dear Lord, may it be so.

HUGE Blessings in the Midst

Very early this spring, way back before we went to RAD camp, back before Reese injured her back, we got a knock on the door.  Salesmen.  We all hate them, but when your husband has had to door-knock as part of building his business, you learn to appreciate the hard work!  [Be nice to door-knockers, please!]

Anyway, we got door-knocked by a building contractor.  He asked us if we ever had an insurance claim on our home.  Um, no.  Not after only living here for 2 short years.  He said he could see evidence of storm damage to our windows from the street.  Storm chaser?  Maybe.  But he asked if we'd be interested in getting our insurance adjuster out here to survey any damage, at no cost to us.  Well, at no cost?  Sure.  Why the heck not?  After all, we bought a 20 year old house with 20 year old windows, 20 year old siding and a roof that we had no record of (neighbors say this house has had multiple roofs over the years but the sellers didn't provide us with any dates).  Not great.  Actually, I knew 2 windows to be completely broken and unusable (thanks, lousy home inspector).  

So, we scheduled the free, no-obligation visit.

Oh, but then Reese injured her back. Our poor pup was completely paralyzed in the hind legs after a freak slip and fall injury.  We had been to the vet, had a surgeon look over her x-rays, we decided $6500 was too steep a price for surgery and opted for far less invasive procedures to help our ailing pup.  I found a doggie chiropractor.  Yep.  You read that right, a doggie chiropractor.  I took our pup for a first visit the very day we had scheduled the insurance adjuster.  

Our builder said he'd be there at our home to meet the adjuster and since everything to be seen was on the exterior of the home, I needn't be home.  Well, I arrived home from said doggie chiropractor at the same time the adjuster and the contractor were up on my roof inspecting things.

I lugged my 37 pound, paralyzed, diapered mutt out of the car and laid her on the grass on my front yard.  The builder and the adjuster immediately asked what happened to my pup and they heard my story.  The adjuster had a dog of her own with back issues, came off the roof to talk to me and wanted info on the doggie chiropractor, so I shared that info.  She was a sweetheart.  And my builder, well, I knew from the moment I met him that he was a good, honest, Minnesota-nice man.  He offered his genuine condolences to me and my pained pooch.

Well, about a week later, I learned that not only did the insurance adjuster grant us a new roof, but new window sashes as well!  If my pained pooch earned us any points by laying helpless, paralyzed and in agony on my front lawn, well, I'm not sure.  Of course, I'd rather have her healthy and free of pain, so I'm not saying I'm glad she hurt herself at all!!!!

But the story doesn't stop there.  Our new roof went on the very first weekday we were back from RAD camp with Quiet Tiger.  I was holding a screaming, thrashing, hitting, yelling, spitting, kicking, swearing, animal of a child all the while my old roof was being torn off and a beautiful new black roof was installed.  Talk about noise levels!  I'm sure my roofers thought I was beating the child, while in reality, I was the one taking the physical beating.  In 1 day the roof was done and I couldn't have been happier.  Or could I?

The builder called back the next day to see how everything went.  He stopped by to look things over and to collect some small hand tools that were left in the dark of night after the roof was done.  Then he told me something else.  Our 20 year old windows had been discontinued.  To find new sashes for all my windows was proving to be near impossible.  He was in contact with my insurance company to get them to increase their payment to get me ALL.... NEW.... WINDOWS!

Weeks later, the builder sent 2 of his associates to measure inside my house for brand spanking new windows.  What a blessing!  We then had to wait all summer long, all autumn long, and through the holidays while my windows were made and painted to my specifications (despite all the honey oak, I want all my windows white and I'll have 1 less thing to paint).

The windows went in today.  They color matched to the white color to that which I'll be painting all the trim at some point in the future.  We only have to pay our deductible and the insurance company covered the rest.  And because the damage was all storm related, an act of God, we've been promised that our insurance rates will not go up.

I was slightly bummed that I didn't get new siding out of the deal because we have so many cracks and damaged pieces, but they couldn't link that to storm damage per se.  But all new windows are very hard to come by from insurance adjusters, so I'm so thankful that we received what we did!

So, if I could go back and prevent Reese's back injury (it has lead to permanent nerve damage), I certainly would.  But I do think that in the midst of a horrible life storm of horribly injured dog and hideous therapy for my RAD daughter, God provided unexpected blessings.  I'm thankful for my new roof and new windows!  Now, to just figure out how to get the siding replaced without having to pay for it!  Wishful thinking, I know!