QEEG

I realized that I never posted about our results meeting from our long awaited QEEG Brain Map earlier this month (there's a link there to learn exactly what a QEEG is).

But first, let's go back a week earlier.  We had a long meeting at a new clinic just 30 minutes from home.  The place isn't exactly what I expected, as it's run by a bunch of chiropractors and not MDs  or psychiatrists or psychologists with lots of initials behind their names (and that's not intended as a pot shot at chiropractors, but when we are dealing with the brain, I want somebody with a lot more credentials behind their names).  Their office takes a 3-pronged approach to healthcare.  And honestly, some of it sounds like a bunch of mumbo-jumbo.  I went in solely for the QEEG and corresponding Neurofeedback which seems to actually HELP these kids debilitated by Reactive Attachment Disorder.  I did not go in for a huge medical work-up.

They did lots of "tests" like balancing, closed eye activities, sensory activities and a very small physical exam, and then finally, that QEEG.  Sadly, I truly believe our daughter played the staff.  She played them like a fiddle.  She couldn't recognize scents that I know she knows from very familiar essential oils.  She couldn't balance like she normally could.  She complained that her belly hurt when the 1 chiropractor came in and pressed on her belly (yet I did it at home less than an hour later and she said it didn't hurt).  My list could go on, but trust me, she played them.  And I know this child and personally, they may fall for it, but I will not fall for it.

So, their 3-pronged approach can be flushed down the toilet for all I'm concerned.  Just give her the bleeping QEEG.

First attempt at a QEEG

Uh oh.  That was a problem from the start.  That same day as all those other tests, they tried the QEEG.  She got the cap on and they injected all the gel into all the holes and then they began the test.  But the girl would not cooperate.  She refused to follow their directions.  She wasn't ornery or throwing a tantrum, she just wouldn't keep her eyes closed when instructed.  The gal who was completing the test insisted my daughter was "too tired after such a long appointment (2 hours) already," and that we should come back another day.  LADY, YOU WERE BEING PLAYED!  But we complied with her own ignorance because frankly, she's my least favorite staff member and wouldn't listen to me and my concerns at all.  We went home, only to come back another day that week.

That day, I had a nice long, STRONG talk with my daughter about how she had better comply or else there would be serious consequences (as if a RAD kid gives a rip about consequences).  Now, I had another run-in with that same lady as before and I almost walked out of the office without said QEEG, but that story is for another time and has since been resolved.  And this time, Quiet Tiger complied.  Within about 20+ minutes, we were done and on our way home again, to wait a week for the results.

Results are EXACTLY as expected.  But first, here's a map of the brain for those of you who might forget the biology of the brain.  It's fascinating stuff!

LEFT FRONTAL LOBE
Results showed abnormally slower brain waves.  This can result in symptoms such as:

• Depression - yep
• Difficult with planning - yep
• Difficulty with word finding - sure, sometimes
• Difficulty with focusing, concentration and being attentive - oh good gosh, yes!
• Unable to multitask - yes
• Poor language comprehension - maybe
• Poor judgement - heck, yes!
• Poor organization skills - yep
• Poor memory recall - sometimes
• Memory impairments - maybe
• Poor working memory - maybe
• Difficulty with problem solving - yep
• Unable to think logically - heck, yeah!

RIGHT FRONTAL LOBE
Results showed abnormally faster brain waves.  This can result in symptoms such as:

• Aggressive behavior - um, yes!
• Anger - holy cow, yes!
• Anxiety - constantly
• Compulsive behavior - all the time
• Overwhelming fear - she lives here
• Hyper-vigilance - her middle name
• Impulsive - all the freaking time
• Increased risk taking - yep
• Irritability - yep
• Manic behavior - oh, yeah
• Obsessive behavior - yep
• Panic attacks - maybe, hard to tell in a 7 year old; mommy has had a few in the last few years thanks to this child
• Poor behavioral inhibition - yep
• Rumination - possibly, who knows what this child thinks about
• Oppositional defiance - scream it from the rooftops, yes!

SENSORY MOTOR CORTEX
Results showed abnormally slower brain waves.  This can result in symptoms such as:

• Attention deficits - sure
• Difficulty calculating math - maybe, but maybe not (she plays her teacher like a fiddle too)
• Difficulty learning motor skills - maybe, but maybe not (after all, she is one-handed)
• Sleeping excessively - this I'll say no to
• Extreme sadness - hard to tell, she's angry a lot, probably not all that sad
• Loss of fine motor skills - again hard to tell with a 1-handed child
• Loss of touch and vibratory senses - very likely
• Poor auditory processing - likely
• Poor handwriting - yep

ANTERIOR TEMPORAL CORTEX
Results showed abnormally slower brain waves.  This can result in symptoms such as:

• Depression - yep
• Non-attentive - yep
• Difficulty with categorization - probably, not sure what her teacher would say
• Poor grammar - not sure; compared to her China-adoptee peers, I'd say my girl's grammar is great
• Poor language comprehension - her teacher might agree to this
• Poor word retrieval - maybe
• Slurred speech - sure, especially when she's dysregulated
• Stuttering - haven't seen too much of this
• Inability to focus and concentrate - heck, yes!
• Disinterest - sure
• Dissociative - yep
• Inability to laugh or smile - sometimes, sure, especially when I want to do a photoshoot
• Lack of motivation - yep
• Lack of creativity - not really
• Seclusive - sometimes

MEDIAL TEMPORAL CORTEX
Results showed abnormally slower brain waves.  This can result in symptoms such as:

• Difficulty processing complex sounds - not sure
• Difficulty multitasking - yep
• Inability to reason with others - heck, yes
• Long term memory loss - unsure
• Poor language and reading comprehension - her teacher might agree to the reading comp part
• Word finding difficulties - maybe sometimes
• Poor emotional processing - gosh, yes
• Poor navigational skills - likely
• Unable to recognize familiar voices - never tried this
• Unable to recognize symbols - unsure

Long story short, the only part of her brain that is functioning normally is the back of her brain that is basically keeping her alive.  From my personal notes above, I think you'd agree with me that the Frontal Cortex (both left and right) is the place of biggest concern!  That describes my daughter to a T.  [And mommy finally has scientific proof that her daughter is messed up and needs help!  Mommy is not making this stuff up!]

The course of treatment from here on out is Neurofeedback.  This new team suggests 20 sessions, plus therapies we are to do at home, which I know nothing about at this point in time.  Half way through, they will do another QEEG to check for progress.  And then at the end of all 20 sessions, they will do a final QEEG to see final results.  All in all, they'd want to see Quiet Tiger twice a week, making all of this take 10 relatively short weeks.

None of this comes cheaply.  It will be about $3000 for all of this.  Although we will most likely be able to apply this to Quiet Tiger's individual deductible and our family deductible, even $3000 doesn't fulfill even her individual portion.  So, it will be all out of pocket.  Plus, that $3000 is the reduced amount if we pay in full up front.  If we pay as we go, we'd end up paying more.

I have some friends from the Healing Hearts Camp back this spring that have done Neurofeedback with their RAD kids and they all report great things!  So, this really is the route we need to take.  Now just to figure out where that money is coming from and when to fork it all over and begin treatments, knowing that these sessions would also take her out of school for a portion of her day, at least twice a week for 10 weeks.

So, there you have it.  I'd appreciate prayers for:
(1) God to provide the funds to begin and take full advantage of every discount we get to keep costs down.

And of course,
(2) for the Neurofeedback to work; for all those brain waves in every section of her brain to be working as they should be, nothing abnormally slow or abnormally fast, so that we can once and for all meet the real Quiet Tiger and see her function as a normal 7 year old should, and see help and healing from Reactive Attachment Disorder!

Christmas with RAD

Come into my home and take a glimpse of what it's like during the holidays with a child with Reactive Attachment Disorder.

You'll see my daughter come home off the bus from that last day of school for the semester and she'll immediately refuse to follow daily directions.  She'll dawdle on the walk home, despite me calling from the doorway to get her rear in gear because it is cold outside.  She'll trudge home and dump her jacket, snowpants, boots, hats and gloves on the floor instead of typically hanging them up inside the foyer closet as she normally does.  She'll refuse to use the toilet or wash her hands.  She'll speak when not spoken to (something that has been a no-no in our house since attending RAD camp last spring).  She'll take advantage of grandparents visiting by running her mouth, asking for anything and everything (we're still doing no choices since attending RAD camp too). 

She knows her normal school routine won't be happening for 1 week and she begins acting out. 

Although seemingly happy, all rules seem to go out the window.  And mom's stress and anxiety start creeping up.

But the girl also has been coughing for a few weeks.  No fever, no major sickness.  Just a small, dry cough.  And something I learned at the aforementioned RAD camp last spring, is that these RAD kids will take something like a light cough and exacerbate it dramatically.  Cough medicine that knowingly always works and has been working to stop this cough, suddenly stop working.  So, coughing fits ensue as the girl tries to play Grammie against mommy.  And this triggers mom and the anxiety increases another notch. 

On Christmas Day, my child with RAD opens a small present, a set of bright colored, cute hair barrettes from her stocking and the girl rudely says, "What is this crap?" and throws them away from herself, all the while looking at mom to see if she'll get a rise out of me.  Mom, blood boiling on the inside, continues to hide any emotions, burying them down deep, knowing that any reprimand, any consequence for the incredibly rude gesture from her RAD child will not be taken to heart.  There will never be an apology, never an understanding of how rude and hurtful her words and action were.  She'll never learn that her pot shot at mommy was another dagger being thrust into my gut, another crank of the wheel that further divides mother and daughter. 

The morning after Christmas, after the grandparents leave for their home, I find that one of my gifts was torn into.  And parts were strewn all over the floor behind the couch.  When questioned, the RAD child places the blame on a grandparent.  The girl doesn't fool me because said grandparent would never leave a mess anywhere in my home.  Then the girl proceeds to tell me that the dogs made the mess.  Um, my dogs have never been able to open a sealed box before and I don't expect that they suddenly wanted to dig into a box of solar landscaping lights.

Later that night, slightly before dinner, both mom and dad lose their cool when the child walks into the kitchen with a face covered in chocolate.  There was no chocolate in her stocking, but mommy was blessed by a sweet treat and the girl immediately denies touching anything or eating anything.  Girl, the evidence is written all over your face.  Dad sends the girl to her room while mom finds a candy wrapper hidden under a piece of furniture.  Mom and dad have both reached their limit.

Yet, the next morning, while running the vacuum over furry carpets still littered with tiny bits of wrapping paper, mom finds not 1, not 2 or even 3, but FOUR more candy wrappers hidden underneath the ottoman.  Again, the girl denies any wrong doing.  She had indeed confiscated and eaten more of mom's Christmas gift that we originally knew that day before.  She touched no one else's stockings, just mom's.  Just another attack on MOM.

And although in my heart I know it's not her, its the RAD doing all this, it sure does feel like a very personal, calculated attack, directly on me.

There can be no wonder I have anxiety issues and secondary PTSD raising a child who attacks me so hurtfully. 

I am thrilled that Christmas break is only 1 week and that she goes back to school in 6 days and 14 hours from now.  But who's counting?  The boys and I will take an additional week off after the RAD child returns to school.  And we'll have FUN and bring back the JOY to the holiday season!

RAD moms, you may struggle even worse than we do.  But know that you are not alone!

Merry Christmas 2017

Christmas Greetings from all of us in Minnesota!

Jay continues building his business with Edward Jones in Zimmerman.  This is his 5th year with the firm.  His amazing work efforts earned us a trip to the Mediterranean this summer!  Our favorite spot was the beach at Villefranche, France where we swam in the Sea.  He is a trainer for Level New FAs just entering their career with EJ.  He is Chamber of Commerce President.  He continues to root for all his favorite Chicago sports teams.

Beautiful Villefranche

Brooke continues to homeschool both boys, keeping her busy all week long.  The house is never clean, but at least the kids are getting an education!  She occasionally fills in for Jay's assistant when needed at the office.  She coordinated the local Edward Jones Christmas party this year for the amazing Region 303.  She enjoyed an early winter photo shoot, taking pictures of the kids for this year's holiday blog.

And now for the kids in photo form:

Quiet Tiger
Age 7
First Grade
Reading like a champ
Loves anything artsy
Starting therapies for RAD in the New Year

Super E -- aka "Pika"
Age 10
5th Grade
Still loves animals and zoology and still wants to be a vet
Amazing cook and baker

Super C -- aka "Tepig"
High school freshman
Enjoying learning Spanish this year
Spends free time at 2 youth groups, having Nerf wars and making videos for his YouTube channel

Quiet Tiger
with Juneau -- 8 year old American Eskimo

Super E
with Reese -- 3 year old Pit mix
Reese still struggles with her herniated disc but loves her chiropractor

Super C
with Mack -- 5 year old Great Pyrenees/Chow Chow mix
Mack is the most laid back giant who sings for his meals

Merry Christmas 2017
from all of us in Minnesota!

Thank God That's Over

November is National Adoption Month.

And for so many people, they take that time to push hard, advocating for kids in need of families.  They share stories of how adoption has changed their lives for the better.  They say how blessed their families are with their adopted child.  They say things like they feel like they gave birth to their adopted child.  They exude joy and pride over their adopted kids.  Awesomeness!  That's how it should be.  But....

National Adoption Month is a trigger, after trigger, after trigger for me.

Because our story comes from the flip-side of the record.

Our adoption journey was a nightmare from day one.  And if you've been around my blog, our adoption diary, long enough, you've read nearly all the gory details.

And just because you bring them home, doesn't mean they are suddenly okay.

We're living a life of Reactive Attachment Disorder and Post Traumatic Stress Disorder.  The daughter we fought like mad for cannot and will not accept our love.  She pushes us away daily.  She lives in a constant state of hyper-vigilance over every aspect of her life from food, to noises, to objects, to the daily schedule, you name it.

I once advocated for children in need of families.  I once even thought perhaps we'd adopt again, even if it were from US foster care.  Our adoption story has only brought us more stress and more pain, including secondary PTSD for me and stressed out boys.  Blessings from adoption are few in our household.  I struggle to get out of bed in the morning, even though it means putting our girl on the bus to school and getting a nice, long 8 hour break from her.  And then the anxiety revs back up come 4:30pm when her bus arrives home and I have no clue who will be coming off of that big yellow school bus.  I long to go back to the time when we were a happy, comfortable, family of four.

Finding help for a 7 year old child is nearly impossible where we are.  Many therapists would take on a new client, if only she were 13.  Those who treat kids younger than 13 are nearly impossible to find, and once found, I learn they aren't taking on new clients.  If we can find someone, therapies will cost us thousands of dollars in 2018, won't be covered by insurance and will force us to drive all over the Twin Cities just to find some relief, some help, some hope of moving forward instead of being stuck in RAD & PTSD.  And much like a cancer, there is not cure for RAD, only treatments that help.

So, National Adoption Month isn't all sunshine and roses for everyone.  National Adoption Month makes me want to sink deeper under the covers and bury myself alive, never to see the light of day every again.  The guilt, the regrets, the grief, the stress, the anxiety, torture me nearly every minute of every day. 

Before anyone thinks this is one giant solo pity party, I can give you dozens of names of people in the trenches with me, fighting the battle of trauma, attachment and anxiety that comes with adoption.  We speak private, true words to each other because there are so few who honestly understand.  We are a tight knit family.  They may keep their voices quiet, but I will not any longer.  Our voices need to be heard because we need change and we need help, our kids need help.  We cannot let the kids' stories end like this!  So, we press on.

National Adoption Month is not for everyone.

504 Plan

Jay and I recently met with the school to begin a 504 Plan for Quiet Tiger.

As a child with a disability, that hand difference makes her qualify for assistance or "special education" by law.  Now, don't get all worked up that I used the word "disability."  Good gosh, y'all, the limb different community gets their panties in a bunch over this and it drives me NUTS!!!  You can see my previous blog post rant if you really want to get into that.  But I won't go down that rabbit trail right now.

Also, with the RAD and PTSD diagnoses, Quiet Tiger again qualifies for assistance from the school district as these fall under the DSM of qualified mental and behavioral disabilities.

The year so far hasn't been all that great in public school, and a couple of awkward happenings in music class led us to believe that we need more teachers educated about how to handle a limb difference.  As for the RAD, we need after school accommodations as well.  I'll expand on that in a bit.

The school has been really quite amazing to deal with regarding all of Quiet Tiger's issues up until now.  They have never wanted to put anything into writing, into a formal IEP or 504 Plan.  Despite having a copy of Quiet Tiger's IEP from Texas, they never wanted to do anything formal here in Minnesota because of money.  Special Education is expensive.  Call it illegal, call it what you may, it honestly wasn't a big deal to us last year.  They have complied with our wishes just verbally last year.  They have honestly been very easy to talk to, very understanding, even sympathetic when it comes to the RAD and how she treats me at home.  But the reason why they don't want to get something formal in writing is money.  Special education is costly to schools.  But we qualify for multiple reasons and we will seek the help for 1 main reason:

Although the school has been wonderful to work with thus far, 

any change in school administration could change things and 

we could find ourselves fighting the system

to get our daughter the help, accommodations and understanding she needs.  

We've already seen it happen.  Last year, Quiet Tiger's gym teacher was absolutely fantastic to work with!  She gave us equipment to use and keep at home for months before a new activity was planned.  She kept me apprised of everything they were doing that required 2 hands.  This year, that gym teacher now teaches at another elementary school and we find ourselves dealing with someone new.

It is time for something formal in writing with the district.

After some wonderful messages back and forth to a friend from high school who has a limb different daughter, and a friend from our days in Nebraska with a son with a limb difference, I made the call to get the ball rolling.

A couple of weeks ago we met with the principal, the 1st grade teacher and the school social worker to begin the process.  The meeting took a rushed half-hour and we outlined what we hoped would help our girl during her entire school career.  The meeting went just okay, but anything dealing with Quiet Tiger just drains me way past empty.  At one point, as the teacher pushed our request to eliminate computers and iPads at the request of our team of attachment therapists and the principal tried to support his staff, I felt like I was on the verge of saying, "Bring me my daughter NOW because I'm DONE.  I'll just homeschool her if you can't even attempt to understand our needs."  It's nearly impossible to get the teachers to see the proven bad effects of technology on the human brain, especially a human brain that has already been harmed by trauma.  We had to decide to meet in the middle on the technology issue for this year at least, for now, until we press on further.  Nothing else was nearly as difficult though.  The social worker took 2 whole weeks to write the official 504 Plan and we received it today.  From here on out, things can be tweaked annually, or as needed if something else should arise.

Here is what is getting put into writing with the school district:
(FYI, this is almost verbatim how its written in my friend's son's 504 too)

DESCRIBE HOW THE STUDENT'S DISABILITY AFFECTS A MAJOR LIFE ACTIVITY:

Quiet Tiger was born without fingers on her right hand.  Quiet Tiger will often refer to this hand as her "Lucky Fin" or "Little Hand."  This condition makes some tasks at school more difficult for Quiet Tiger and she may require assistance to be successful.  Quiet Tiger also has been diagnosed with Reactive Attachment Disorder, Anxiety and PTSD.  She is currently in intensive therapy to address these diagnoses.

ACCOMMODATION/ACTION TO BE TAKEN:

When working on a task that requires 2 hands, a wrap will be used on Quiet Tiger's affected hand to allow her use of both hands (ex - jump rope, mallets for instruments, etc.).  Teachers should communicate with parents and/or Quiet Tiger to determine effective ways of creating this accommodation and how to wrap.

Quiet Tiger is allowed extra time, without penalty, for tasks that typically require 2 hands (ex - tying shoes, zipping, cutting, etc.).  Quiet Tiger should be encouraged to complete these tasks independently to the best of her ability.

During non-instructional times, Quiet Tiger is able to ask classmates for assistance with tasks that require 2 hands.

This school year, as a first grader, Quiet Tiger will be exempt from homework being sent home and graded.  The homework will be collected in a folder in Quiet Tiger's desk for her to complete at other appropriate times.

Quiet Tiger has become self-conscious of her right hand and may need help advocating for herself (ex - explaining to other students about her difference, making accommodations for her right hand, etc.).

This school year, as a first grader, Quiet Tiger will be excused from Technology Class.  When the class is in Technology, Quiet Tiger will go to ASR and work on classroom work and homework she was excused from.

In the event of a substitute teacher, Quiet Tiger's accommodation plan will be made available to that person.

That's all that is written into her 504.  Now, we still aren't receiving the accommodation we need.  Her team of attachment therapists don't want Quiet Tiger on any form of technology.  Even in 1st grade, iPads are used a lot in the classroom.  In essence, its a substitute for the teacher when she's working with other students.  The iPad time is not monitored, history is not checked and students are basically unattended to work on certain apps.  The problem that this creates for a RAD child is multifaceted.  If we cannot allow her to do these things at home, per her therapists wishes, then allowing her to use them at school continues to drive the wedge between us.  The continued damage that screen time does to her brain makes us take a step back in her therapies at home.  Allowing a child who has difficulty connecting with fellow humans in appropriate ways, the use of technology which takes away that human interaction only causes further damage.  The principal will not budge on the use of iPads in the classroom and insists that there is nothing that can be done.

Enter PACER.

I called our advocate at PACER and she believes that the school and the district can and should do more, particularly because the removal of technology intends to be merely temporary -- for this year, and perhaps next as we continue on with therapies.  We fully hope that all our efforts at home can help heal her brain and teach our RAD daughter how to use technology responsibly.  So, our advocate gave me tons or resources and told me to contact the district directly and ask questions.  She encouraged me to go ahead with an IEP so that Quiet Tiger is assessed yearly to meet behavioral benchmarks due to her behavioral disabilities.

So tomorrow, I will send back the signed 504 Plan documentation.  Then I will place a call to the district office and ask a few questions and see what they say.  I will also ask formally for that IEP assessment.  They will be informed that I am working with an advocate at PACER and hopefully we can find a way to eliminate that iPad time in the classroom.

If all else fails....

If it comes down to it, our advocate says we should file a complaint with the district against our school.  She understands our unique needs and truly, professionally believes that the school can and should do more to help us.  She knows we don't want to be "those parents" who keep fighting the system, but we had to fight to get this child home for 3+ years, we've had to fight for her heart and traumatized brain for 5+ years, and now we have to fight to get her needs met in public school.

Its ridiculous!  Friends, I am so... tired... of... fighting.  I have nothing left to possibly give.  This is where I am right now:





And if all else REALLY fails....

I've called a local charter school just to see how much iPads and technology is used in 1st grade at their location.  For them, it's merely a reward, a treat for the students.  And the fully understand our need to cut all technology for a time.  To boot, they have openings in first grade right now, AND they even bus to our neighborhood.  So, if all else REALLY fails, we have an option to pull her out of her current school and put her in a charter.  I hope it doesn't come down to that!  I really hope it doesn't!!

But that's our 504 Plan process in a nutshell.  I hope it helps anyone out there looking to enter the process.  I'll likely have another blog post all about my conversation with the district and our whole IEP process.

Disabled Rant

Lately I've really had it up to my ears with people in the limb different community!  Sorry, friends.  It's true.

Their latest deal which seems to get their panties in a bunch are the words "disabled" (and it's forms), "handicapped," etc.

They want to hear words like "different," "differently-abled," etc.

Good gosh!  

Everybody is so offended by every stinking little thing!  

We need to grow up, people!  

Seriously!

Before I go on, to those of you who have heard the word "disability" or "handicap" used in a derogatory way, or with a snide, rude, demeaning tone, I'm not talking to you.  This post is NOT about you and those situations.  In those situations, I... have... your... back!

I'm talking to those parents who would in no way ever think of checking a box on a daycare/school/church/sports/doctor form asking if the child has a disability, or even just someone simply noticing and commenting plainly, blankly with no purpose of harm whatsoever.

My daughter's right hand or lack thereof.

In agreement...

Yes, our kids were born differently.  They were not born as a "typical," "normal" child with all of their limbs in tact.  They have what doctors like to call an "anomaly or defect."  Frankly, we are all born differently.  Every single one of us has something different about them.  For some of us, the difference is more profound, more visible, more life-altering.  For some of us, it's not.

Yes, I've said all along in these last 5 years that there is nothing my 1-handed daughter cannot do!  And it's true!  Her special need, her disability, is not her hand!  It's her Reactive Attachment Disorder that is by far more debilitating than anything else in her life.  BY FAR!

In protest...

But here's the deal.  The word "disability" and it's forms is more of a legal term than anything else.  And limb different friends, it's a GOOD thing, this word "disability!"  The Americans with Disabilities Act (ADA), and the corresponding Individuals with Disabilities Education Act (IDEA) protects our limb different kids from discrimination!  And isn't this what we want?  Haven't you been saying that you don't want your child discriminated against in life because of their limb difference?  Wouldn't you even agree that it would be considered illegal to discriminate against someone who is "differently-abled," in your words?

Then friends, remove the panties from your rear end and be THANKFUL that we do have laws that protect our DISABLED kids from discrimination!

About 3 years ago, 

I might have agreed with you 

about the word 

DISABLED.

But now I don't agree with the arguement.  

Let me tell you what we have been going through personally these last few months.  Hopefully this will put it in perspective to you, especially those of you with infants and toddlers with limb differences (that seems to be the majority of the group raising the uproar of the word "disability.")

1.  I have not found 1 thing that my 1-handed daughter cannot do (other than monkey bars on the school playground).

2.  Some tasks take my 1-handed daughter a few seconds longer than 2-handed peers (like buttoning pants after using the restroom, zipping a jacket, tying her shoes)

3.  Because my daughter has extremely limited use of her right hand because of no fingers whatsoever, she has found ways to adapt to things to make them work for her (like holding a jump rope in gym class with use of a wristband, or holding a mallet differently than instructed in music class).

4.  Teachers this year have sadly treated her differently in school, haven't seen the potential or allowed her to try and make her own accommodation or adaptations, because of her hand difference, and because of which, we have begun the 504 Process (which she qualifies for... under... the... IDEA... law).

5.  After speaking with an advocate about getting assistance and accommodations from the school, we have learned that there are laws in our state pertaining to Emotional Heath Disorder (EHD) or Other Health Disability (OHD), for which my daughter clearly, without a doubt qualifies.

Friends, while you may think that right now, your limb different child is just like any normal child, there will come a day like we have just been having, when you need to reach out for some help, all because of that very same limb difference!  Think about it.  My daughter with only 5 fingers might need adaptive equipment in order to learn how to play a recorder in elementary music class.  She might need assistance from the school in finding a 1-handed typing program.  And she might need the accommodation of more time in typing any school assignments.  And she might even need help advocating for herself in a school setting when kids bully her about her lack of a right hand.  It's all reasonable, right?  Right!

And you can't have it both ways!

You can't say in 1 breath that your child is not disabled, and then in the next breath, ask the school or employer or other professional for accommodations due to a limb difference.  You can't have it both ways.

Let me leave you with 1 final thought.

Your child's disability (there, I said it) makes your child no less of a person!  Period!  So, don't let that word trip you up.  Don't make a big deal out of that word in front of your child!  They are already leading a different life from you or I.  You and I (most likely) have not had to live with the stares, the questions, the giggles, the comments, the pointing from other kids.  Let's not give the words "disability," "disorder," or even "handicap" a bad wrap!  Your child's value is not determined by a word that is merely meant to diagnose medically or to protect or even to HELP these kids by US law.

And boldly, I will shout it from the rooftops that my daughter's value isn't determined by any word you put in front of her.  And that includes words like "disabled person" but also includes the words "adopted child" because her story matters.  Every single part of her story matters.  And she was created by a loving God who is perfect in every way.  He didn't make a mistake when He created her.  He knew precisely what He was doing.  And He loves her more than I ever possibly will be able to love.

And that alone is where her true value lies.

School is in Session

Pop open the champagne because school has begun!

I have a first grader.

I have a 5th grader.

I have a high school freshman!

The boys started homeschool loosely on August 21.  It was really unorganized, which is completely atypical Brooke fashion.  That morning at 9am I went to the basement and un-boxed Super E's curriculum.  And since it was last used by Super C 3 years ago, I had no clue if we were missing anything to the core curriculum considering we moved, we lend books out, etc, some get damaged during the school year, etc.  Plus, I found a spelling program that we had never used before, so I had to review that to see if it would work for my spelling-challenged 5th grader.  We had to play the day by ear because we would never know when Quiet Tiger might act up, need an intervention and interrupt our school day.  And she did act up.  Sigh.  I knew it wouldn't be easy with her in the house.  [It's nearly impossible.]  To add to our first day of school chaos, the eclipse happened and we had heavy cloud cover and even a brief thunderstorm that morning, so we watched for over an hour on NASA TV.  Day 1 of school and we were already behind.  Good gosh.  Not a good way to start the year.  Later that week I had to go into the office too when Jay's assistant took some paid leave, so that meant a day of just the boys catching up, while dealing with the Quiet Tiger Tornado all by themselves.  But we pressed on and we already have 2 weeks of homeschool under our belt.

Quiet Tiger started public school today.  And allow me 1 brief rant:  I fear this year is going to SUCK because the peeing and pooping in her pants began 1 week before school even started.  My 7 year old child has been wearing a diaper daily since then, and yes, she has filled it!  I feel utterly hopeless when it comes to this child.  Eleven more years of this crap.  Thanks for letting me rant!

The boys and I took today to have 1 final day of summer fun since a good 12 weeks of their summer was consumed by hell therapy for their sister.  I got Quiet Tiger on the bus, took Jay to pick up his car (his car was being repaired by his office over the weekend), came home to get the boys and whisked them off to an amazing morning of archery in a nearby town.  For 2 hours all 3 of us learned the basics from an expert and had time to shoot on our own.  IT WAS AWESOME!  I believe we have found our sport!  Even I loved it and want a bow of my own (birthday and Christmas coming up -- HINT HINT)!  We had a quick lunch out and I promised the boys some time searching local resale shops for used Nerf guns before getting home by 4:30 for the school bus to drop the girl off after school.  The bus was over 30 minutes late!  I get that the bus drivers are getting used to routes and numbers of riders, but sheesh!  Had my neighbor Lisa not been with me waiting for her child, I would have been calling the bus company and letting them have it!

The rest of this week I'll be in the office again, so that's a big monkey wrench in our week.  Even though we only have 2 weeks of homeschool done, the boys get this week off.  It's just easier that way for all of us.  High school curriculum is more involved for Super C, and Super E still needs someone to teach him his curriculum and I can't let that fall on Super C's shoulders like last year with all he has on his plate.  They don't have to stress getting school done on their own and I don't have to stress trying to find time to get it done after a full day in the office.  So, 1 week off already.  They'll enjoy the quiet, I think!

Here's hoping for a great school year!  Prayers appreciated!

An Open Letter to RAD Grandparents Everywhere

Dear Grandparent of a RAD Child,

I'm sending this letter with an URGENT stamp on it because it is of highest importance!  You are  part of our family, part of our team and we need you.  Raising a child with Reactive Attachment Disorder is so incredibly difficult and we, your grown kids, need your help.  Thanks to trusted professionals, I have some detailed advice for you on how to help your RAD grandchild thrive while under your care.  What I have to outline looks likely very different from what you envisioned grand-parenting to be like.  Rest assured, we have recently put this outline to the test and have every reason to believe that it works!  Disclaimer:  Run this post by your adult children and allow them to tailor this to the needs of their family.  But these guidelines from our attachment therapist worked wonders for our family!

Here are the top 10 list of Dos and Don'ts:

(In no particular order...)

***  ONE  ***

Don't:  Allow your RAD grandchild any unsupervised, independent time alone!  These kids can and do get into trouble quickly!  They love to see what they can get away with!

Do: Keep a 6-Foot Rule.  Keep these kids close to you all day long.  They can play at your feet or sit on the couch next to you.  If you need to cook a meal, they can sit at the table doing a quiet project.  If you need to get work done outside, they can follow you or you can even tie a 6-foot rope from your belt loop to theirs!  If you are out in public, the child should walk next to you, preferably holding hands with you, or slightly behind you -- never out in front or running off from you!



***  TWO  ***

Don't:  Go out for lots of special events.  Taking these kids to the zoo or a favorite restaurant can cause a child to feel unsafe away from home, even though they may show excitement with a special trip.  They can become over stimulated and wreak havoc everywhere they go!  Trust me, my mother-in-law took my kids everywhere during one of our work trips and my daughter stole from shops, threw massive tantrums in public, and on and on.  Save yourself the hassle and embarrassment!

Do:  Stay home with the kids.  No amusement parks.  No special shopping trips (no special gifts for them either).  No zoo.  No dinners out.  No picnics by the lake.  No walks to the park to play!  Stay home!  This is the child's safe zone.  We want all the fun stuff, the awesome activities to come from mom and dad!



***  THREE  ***

Don't:  Offer sweet treats!

Do:  You're not surprised to hear that kids consume too much sugar these days!  Sugar alters the brain and there is science to back up that statement!  We do not offer sweets in our house unless on very special occasions.  Sugar amps up my daughter like no other!  Grandparents, offer healthy meals and maybe eliminate desserts all together while the child is in your care!  Feed your RAD child a lot of protein-rich foods to fill them up!  Again, we want all the special fun treats to come from mom and dad!



***  FOUR  ***

Don't: Allow the child any choices!  This will lead to manipulation and trouble!  You'll have a child who constantly is pushing you to get what they want.  They'll start with something small and work their way up.  And contrary to popular opinion, these kids cannot and should not get what they want all the live long day!

Do:  Make all the decisions, every decision, all day long for the child.  This includes laying out clothes, shoes, what will be served for all meals and snacks, what you will do throughout the day.  I'm not kidding when I say the child gets zero choices!



***  FIVE  ***

Don't:  Allow electronic devices of any kind!

Do:  Unplug!  This won't come as a shock to your generation: kids these days are obsessed with electronics!  They don't connect to people one-on-one.  So why on earth would we give an attachment challenged child an electronic game, laptop, device or TV of any kind?  My daughter easily becomes obsessed with any kind of electronic device she is given and will easily throw a raging fit if you take it away!  These kids need to learn how to connect with people and they cannot do that if they have their eyes glued to an electronic screen!  Turn off the TV and hide the remotes.  Unplug the DVD player and stash it in a storage closet.  Remove your laptops or computers.  Hopefully parents have made sure handheld devices aren't even available, but if the child sneaks one in, take it away and lock it up somewhere.   If the parents want to Skype or Facetime while they are away, do so on their schedule and make sure the computer is removed after the call.

Do also alternate play time with exercise time.  Make sure these kids get lots of exercise during the day!  A tired child is a child who sleeps well.  And a rested child is much easier to deal with!  Go for long walks.  Have them jump rope, jump on a trampoline, play basketball if you have a hoop, be active!  Alternate that exercise time with more quiet play like artwork or reading (a book, not an electronic device).  We use a block of 30-40 minutes for exercise time and quiet play.



***  SIX  ***

Don't:  Change the schedule.  Stick as close to the child's known schedule as possible.  These kids are master manipulators and they love to manipulate grandparents!  In our house, we actually have blue painter's tape over every digital clock in the house because knowing the time of day turns our RAD daughter into a master manipulator!

Do:  Keep mealtimes, play times and bed times as close to normal as possible.  The change from being away from mom and dad is change enough!  Keeping close to their known routine will help a child feel safe, reducing the amount of misbehavior.



***  SEVEN  ***

Don't:  Put up with violent behavior.  Some of our RAD kids are known to be violent at times.  They might have a history of hurting themselves or others.  Obviously, this needs to be stopped immediately!  Hopefully, your RAD grandchild will be on their most excellent behavior with you and these outbursts won't even happen!

Do:  Be prepared!  If your grandchild rages, put the child in their room with the door closed until they are quiet for 2-3 minutes straight.  Hold or swaddle the child in a sheet if the child is younger and you are able.  Hold them tightly until you feel their body relax.  If the child is staying in your home, you may want to create a safe space for them such as a guest room with all (and I mean all) breakables and valuables removed.  You'll be surprised what these kids can get into and break when they are angry and scared and acting out!



***  EIGHT  ***

Don't:  Plan out your day.  No agendas, no checklists, bucket lists, etc.

Do:  Keep your child in the present.  Don't share any thoughts or ideas about what is going to happen during the day.  This can cause manipulation and games.  Even if you say you're going to grill chicken for dinner in a few hours and you mistakenly burn the chicken and have to order pizzas, that is enough to make the child feel unsafe and become massively dis-regulated!  Keep all conversation about the here and now!



***  NINE  ***

Don't:  Hug your grandchildren.  I know.  You think I'm a whack, a nut, and you're about ready to just turn off your computer and never open it again.  Hugs are an intimate point of bonding!  Yes, these kids needs lots of hugs to heal their broken RAD hearts.  But those hugs must come from the parents only!  These kids can tend to parent-shop and cling to whoever will give them the love, joy and affection they need.  They need to learn to find that in their parents first!

Do:  Offer high fives and pats on the back.  Believe it or not, you can still offer affection without a hug and kiss to your precious grandbaby!  A smile, a high five, pats on the back and solid eye contact are plenty for the RAD child.  The goal here is that we want the child missing those hugs, that closeness, that bonding from mom and dad!  I can personally attest that we have done this and when we returned home after a week away, my RAD child sought me out in the van on the way home from the airport, reaching out to me, wanting to hold my hand, to be as close to me as possible!  As absurd as this sounds, grandparents, this works!  I've seen it.  I've lived it!



***  TEN  ***

Don't:  Talk about these strange, odd rules in front of the RAD child.  Don't talk badly about the parents.  This easily causes the child to think their parents really are crazy and that they shouldn't mind them.  All the work your grown children have done with therapists will go down the drain very quickly if the RAD child knows you're not part of the team!

Do:  Talk up your grown children and make sure your grandchild knows what awesome parents they have!  The work we are doing raising these kids is agonizingly hard!  We've had to learn a whole new set of parenting techniques to heal these kids and their broken hearts and misfiring brains!  We fight so hard for these kids and we see countless therapists and put our time and money into finding proper help that we so desperately need!  Your grown children need your love and support now, perhaps, more than ever!  And your grandchildren need to see you cheering the parents on like crazy!



***  ELEVEN (because this really needs to be added)  ***

Don't:  Forget about your healthy grandkids.  Your healthy grandkids deal with a lot of stress in their homes with a sibling with RAD.  They deal with the behaviors, the manipulation, the therapies and trips to the professionals too.  They need a break just as much as the weary parents do!

Do:  Spoil your healthy grandkids!  Spoil them rotten!  Love on them!  They need you to pour into them.  Now, there is a balance here when you have healthy kids and RAD kids.  If there are 2 grandparents available, have 1 stay home with the RAD child while the second grandparent takes the healthy grandkids to a movie, to the pool, to the store for a special treat, to the frozen yogurt shop, you name it!  Healthy kids can handle all that stuff and they need it because they give up a lot of this in their every day lives!  If there is only 1 grandparent available, make that spoiling time after the RAD child has gone to bed.  Rent a movie, make ice cream sundaes, have a campfire outside and roast marshmallows, have special gifts tucked away from them that they can open and play with away from their siblings' eyes!  And your favorite thing:  hug the stuffing out of your healthy grandkids!  They need it!  They need your love pouring into them!



Grandparents, remember that old joke about your job as grandparent is to spoil your grandbabies rotten and then send them back to their parents all hyped up and wild?  I know we all laugh at that.  But your grown child of a RAD child begs you to reconsider!  Not adhering to your grown child's parenting wishes and desires could set your RAD grandbaby back months!  Please do all you can to listen to and abide by the advice, rules, limits your grown kids put before you.  You hate it when someone wastes your time or money, right?  Well, don't waste your grown kids' time and money that they have put into therapies and professional help for their RAD kids!

Grandparents, you can do this!  I know it sounds scary and maybe even downright ludicrous!  But I can attest to you that my mom and stepdad just did all the above during our 10 days away and it worked!  They did an amazing job at keeping these rules suggested by our Attachment Therapist.  Not only was my mom pleased with her time here, she actually enjoyed it!  While my RAD daughter played quietly 6 feet away from her, she painted my deck (something I had the desire to do myself, but had no time to do myself because of therapies for my RAD child).  They took walks.  They read books.  They colored.  They worked in the yard using a 6-foot rope around their belt loops to keep my daughter close.  They didn't go to the zoo.  They didn't go out for pizza.  They stayed close to home and they ordered pizza for delivery.

Grandparents, I can fully attest to you that when we came home, my RAD daughter was excited to see us!  She hugged us and smiled and almost couldn't take her eyes off of us!  She wanted to engage and touch and be held.  She wanted that close attachment that comes so agonizingly hard for her!  The program worked and we were all pleased, parents and grandparents alike!

And lastly, Grandparents, I want you to know that this is all very likely temporary!  With hope and with therapy, these kids (my RAD child included) can heal from Reactive Attachment Disorder!  With time, hopefully your RAD grandkids will heal and become that healthy child everyone wants them to be!  And when that time comes, you will be able to spoil them rotten like you so badly want to do!  We have your back!  We believe in you!  You can do this!  Your grown kids and your grandkids (healthy and RAD) need you so much!

Post Camp Update - Phase II

We have officially completed Phase 2 of Quiet Tiger's post-camp therapy.  As said in my last post, these last 6 were a bit easier, but not by much.  In fact, life had to happen a little bit (no, a lot) more during Phase 2, because we had given up everything on our calendars during Phase 1.  And then a few things happened here and there, leading us to switch up the process of Phase 2 a little bit.  Confused?  Hang on and I'll explain.

I've got to say that 12 weeks, that's 3 months of this, has honestly ruined our summer.  I'm not going to apologize for sounding pathetic or overly dramatic.  I haven't seen friends, I haven't been to church, I haven't been able to talk on the phone with family or friends because the girl will react and try to control.  And after 7pm when she goes to bed is the only family time or me time I'd get before I'd hit the sack at 10:30pm.  I'm so, so, so D - O - N - E!

Here is what our last 6 weeks have looked like:

Talking changed slightly as we began Phase 2.  We were able to talk "to" her again, but only using simple phrases like, "Good!  Well done!  Good job!"  We were able to give her simple directions as she re-learned tasks and we said things like, "Stay on.... don't get off."

Quiet Tiger received a tiny bit more freedom from being in the front carrier.  I still had to carry her 6 hours a day these last 6 weeks.  But her time out of the carrier was spent doing various exercises.  What was most interesting to me was the addition of crawling games.  Many of these RAD kids missed their crawling stages due to neglect.  We know Quiet Tiger was tied to a crib during her toddlerhood and she likely missed out on this developmental milestone of crawling.  So, we pulled up the pop-up tunnels we had kept since the boys were toddlers and my home became a messy network of tubes and tunnels and obstacle courses of crawling activity.  Super E particularly liked making up crawling challenges for his little sister (most of the time)! 

In addition to crawling activities, and continued exercise time on the trampoline and walks around the neighborhood, each week of Phase 2 added something new.

PHASE 2 -- WEEK 1

The first exercise we were to accomplish involved limit setting.  Miss Quiet Tiger had to learn how to sit on a beach towel with a bunch of Duplo Lego blocks (the toddler kind) and play for 5-10 minutes.  During this time, no blocks or body parts could leave the towel.  Even one tiny little pinky toe over the edge of the towel and she was whisked back to the baby carrier.  Once she could learn this limit setting activity, we moved onto the second step.  Although on Day 1 she seemed to stay within limits, we practiced this activity for 1 week.

During week 1, we had Jay's Summer Regional for a long weekend up north and we tried as best as possible to keep up with the therapy as prescribed, but in all honesty, it didn't really happen.  Quiet Tiger went to child care when I was in required meetings.  I brought the carrier with me, but she never used it.  I brought the beach towel and blocks with me but she only used those when we were in the room, which was very rare.  I still hand fed her at every meal.  I allowed her swimming time in the pool while I rested my weary mind, body and soul poolside, talking with fellow FA wives.  As much as I knew I shouldn't have done it, I needed it.  I truly did.  Quiet Tiger still threw her fits that made me want to pack up and leave early, forcing Jay to mooch a ride home from a colleague, but I toughed it out as I have been forced to do this summer and we made it through.

PHASE 2 - WEEK 2

When we got back from Regional, we jumped into Week 2.  This second step was all about body control.  Quiet Tiger had to learn how to sit in a chair and be still for 30 seconds.  She could talk, but not rage.  She had to sit relatively nicely, but we were not to give too much instruction as long as she wasn't hanging over the sides of the chair.  We practiced this activity for week 2.  And much like learning to sit on the towel, she accomplished this task very quickly.  We kept up the practice for a whole week, extending the time in the chair.

But something else happened in Week 2 that made us switch up the program, by suggestion of one of our trusted therapists. We had an evening outing with clients on our calendar.  That meant Miss Quiet Tiger staying home with her brothers.  I fed her dinner before we left, had her in her pajamas too.  All she needed was to wait 30 minutes until bedtime.  After midnight when we came home, I realized quickly that the girl did not sleep.  Instead, she went into the master bathroom (again, she had been sleeping in our master bedroom for weeks at this point) and went through drawers, opening make-up remover pads, playing in some kiddie make-up I was saving for her for a much later date (that was hidden way back in a cabinet, so she definitely had to search for them).  And next to my nightstand I found that she had twisted and damaged my 1 and only good charger for my tablet and phone into a rats nest that was nearly beyond recognition.  I was livid!  She did nothing to Jay's stuff.  It's all an attack on me.  Is there any wonder why we RAD moms have PTSD ourselves?  Good gosh, y'all!  What a nightmare!  I emailed one of our therapists after midnight.  She told me that we could immediately send the girl back to her room for bedtime so that her destruction of my stuff wouldn't happen during bedtime hours again!  She remained on the crib mattress on the floor, close to her bedroom door, at the suggestion of the therapist.  I also ran to the resale shop and found a used video baby monitor.  These were suggested by the therapists at camp.  I set it up on a dresser in QT's room temporarily until I could actually hook it up onto the wall when she returned to her twin bed in the coming weeks.  But HIP HIP HURRAY!!!!  I was finally getting my bedroom back!  More on bedtime in a bit.

Here's something else we learned at camp and it's a bit of a rabbit trail, so bear with me.  We needed to eliminate everything from her bedroom.  No toys, no books, no lamps, no dressers (if that can be avoided), no pictures on the walls.  NOTHING!  So, in Week 2 when we put Quiet Tiger back in her room to sleep, I emptied out all her drawers (leaving the dressers there, but eliminating the objects inside that she could choose to destroy at her will) and put all her clothes in the closet.  All pictures came off the walls, the dress-up area was removed, even decorative items on top of the dressers were removed.  The closet was locked with child locks at the very top where she could never reach them.  It's sad and depressing to have to remove such cute, fun things from her room.  But we have to do this in order to protect those items and to keep her brain from being tempted to destroy everything in her path.

PHASE 2 - WEEK 3

The third week, our daughter was invited to dress herself again.  One thing we learned at camp is that kids with attachment disorder get absolutely zero choices until they are healed!  They don't even get to pick out their socks or underwear for the day!  Zero choices!  Mom and dad make the decisions, all the decisions, every single day.  The child gets zero say in matters!  It really makes sense when you live with a RAD child and their controlling ways.  So, in week 3, Quiet Tiger was able to dress herself again, but we still chose her clothes.  And so you can see how she personally digs into my heart to hurt me, one day I picked for her the shirt from our family reunion last summer.  My boys love their shirts.  They were super cute.  But the minute I grabbed that shirt for Quiet Tiger, she had to make some audible, little comment about hating that shirt and how she never, ever wanted to wear it.  She makes no other comments whatsoever about other clothes.  But the one from the family reunion makes her comment such hateful things with respect to family.  [Shaking my head at the absurdity, but it hurts me, it really does and I have to try not to show it or else the girl wins!]

Weeks 4 and 5 were switched for us.  As we wrapped up Phase 1 of this therapy, we realized that much of Quiet Tiger's rage revolves around food.  I've said before how this child can eat me under the table, which says a lot seeing how overweight I am!  One thing I noticed in Phase 1 was that sometimes, many times, Quiet Tiger would swallow food whole like a snake!  No chewing, just swallow.  Good grief!  She didn't have any dental problems or pain, just massive food insecurities.  Sigh.  So, week 4 of Phase 2 was supposed to be Quiet Tiger eating by herself again, like a toddler with food cut up into pieces.  But we decided food would be the thing we needed to keep under control until the last minute.  So, we swapped weeks 5 and 4 at the suggestion of the therapist.  Then again....

PHASE 2 - WEEK 4

Week 4 was supposed to be all about sleeping in her own room again.  I'm not going to apologize, Jay and I like sleeping with our TV on at night until we fall asleep and it turns off automatically.  We like the quiet background noise, listening to Friends, The Office or some other funny sitcom at night to lighten the mood in our household after long, trying days of this therapy.  With our daughter in our room, the world's lightest sleeper, TV in bed wasn't an option.  In fact, TV is never an option ever with a RAD child.  No TV on at all (until she goes to bed at 7pm when we watch something or play video games with the boys) until the child is healed.  But I digress.  Quiet Tiger moved back into her bedroom during week 2.  What we did back then was to move the crib mattress back to the floor in her bedroom.  She did not get to sleep in her twin bed.  So, since week 2, she had been on the crib mattress on her floor.  We also installed a cheap door alarm on her bedroom door.  This was suggested at camp because in their previous lives, nighttime might have been a very scary time for a traumatized child.  Now, we don't think anything bad happened in that orphanage overnight, other than our daughter's cries going unanswered until she just gave up trying.  But the alarm on the door serves 2 purposes, it tells the child when someone is entering their room at night and it also alerts the parents should the child try and escape their room after lights out.  I happened to have an extra door alarm from the 2-pack that I bought for Jay's office, so I installed the spare on Quiet Tiger's door.

PHASE 2 - WEEK 5

That brings us to Week 5.  For Week 5, well, we were gone.  Jay earned a trip through work and he, Super C and I were off for a week on a Mediterranean cruise while Super E and Quiet Tiger stayed home!  More on our awesome, much needed work vacation later.  For Week 5 my mom and stepdad were here.  We had them keep the status quo and not change anything up for Miss Quiet Tiger.  Now, my mom couldn't carry the girl in a front carrier, but with help from a web conference with one of the camp's therapists, Quiet Tiger was given strict boundaries and could not be spoiled by her loving Grammie!  I know many will want a post outlining how that week looked, along with some do's and don'ts for grandparents.  And I will post that, I promise!  It is good information, no, it's CRITICAL information, directly from one of our most trusted, experienced, loving and encouraging therapists!  If you have a RAD child who sees grandparents or even close family and friends often, it will be a post you don't want to miss!

PHASE 2 - WEEK 6

Once we were home, we began carrying Quiet Tiger in the front carrier again after being out for the week we were gone.  Yeah, she bucked -- physically. She had a week of "freedom" and here she was "trapped" again in our arms with no control anymore.  Taking away her control scares the bleep out of her, so she reacts like a caged animal.  Talk about a welcome home.  Sigh.  After a couple of days of being held again, I moved Quiet Tiger back to her twin bed, all the while keeping her on that video baby monitor at bedtime.  Her bed is right by her window and I can easily foresee her trying to destroy her curtains in there one day.  Yet she knows she is being watched in her room, so she hasn't tried anything as of yet. 

In addition to all the steps and activities I've already listed, we began to allow Quiet Tiger to feed herself again.  No food choices are allowed!  Not even suggestions!  In fact, if she said something like, "Peanut butter and jelly sounds good for lunch," I'd make sure to make a turkey sandwich, or heat up leftovers from dinner.  No choices!  Mom and dad set the meal plan, mom and dad fill her plate, we cut everything into toddler sized pieces, and the girl was allowed to hand-feed again (not even utensils unless it's something like soup or something, which then we still hand feed her ourselves).  She is not allowed to take one single bite until mom or dad take a bite at the meal table!  Mom and dad decided if seconds were allowed, only after mom and dad were done with firsts.  These are all important steps to take with food for attachment challenged kids!  And food is a HUGE issue for our girl.  All these steps make sense to me, yet I truly wonder if she'll ever be able to get over being hungry in her infancy.  Makes me so mad I could kick kittens!  Come on, China!  Look what you did to this poor child!  Curse you!

So, that wraps up our 6 weeks of Phase 2.  It happened to end on Quiet Tiger's 7th birthday.  I truly hope these last 12 weeks were life changing for her and that we truly can have a re-birth of sorts for my big 7 year old!  I have hope, but the change is so hard to see when we are living in the trenches day by day.  Former camp-goers say the first year post camp is the toughest, so we may have a long journey ahead of us yet, but the camp track record is pretty huge and these kids can heal with this program!  So we need your continued prayers for healing!

This post is long enough, so I'll write about what we do from here on out in another post, because from here on out, we officially begin all the steps and processes we learned at the Healing Hearts Camp.  Thank you for your continued prayers!  Please keep them coming as we venture into all the techniques we learned at camp back in April!  Wow, that seems like a lifetime ago!  I hope I remember it all!

Post Camp Update -- Phase 1

[Note:  What you are about to read isn't pretty.  It's raw and ugly.  Any rude comments or unhelpful comments, even if well-intended, will be deleted.  We do not need any negativity with all we have on our plates!]

I know many have been anxious for a post about how things went at the Healing Hearts Camp that we were invited to at the end of April.  While I still promise a good review of camp, I simply haven't had time.  Instead, this is an update from our 6 weeks of prescribed in-home, intense therapy that we were asked to try at camp.

Miss Quiet Tiger did not respond as well as hoped at camp.  Anytime she needed to go to the intervention room, she'd come back to us and be able to explain what happened, but her lack of eye contact was bothersome.  Her eyes darted anywhere around the room, anywhere except our eyes.  That quickly showed her lack of bond with any of us, even after 5 years home.  Welcome to Reactive Attachment Disorder Land.

The team prayed over our family and asked us a bold question.  Would we be willing to "wear her" for 6 weeks at home, to hand feed her like a baby, to play baby games, to speak baby talk, to basically regress her back to infancy to release her trauma in the safe arms of her mom and dad?  We were told she'd respond better to the techniques we learned at camp if she could release that baby trauma and turn to us in her time of need.

Reluctantly, I agreed.

For 6 weeks at home, I carried her in a borrowed front-carrier.  For 6 weeks we hand fed her.   For 6 weeks we talked "over/across" her, not "to" her, if that makes any sense.  For 6 weeks I rocked her in Jay's recliner in the living room.  For 6 weeks she was either carried or swaddled and cradled in our arms.  For 6 weeks, she received 2 daily sessions of 30-minute exercise time where she got to jump vigorously on a trampoline or take a nice long walk around the neighborhood.  That was her only time out from our arms during waking hours.  For 6 weeks she slept in our bedroom on a crib mattress on the floor next to my side of the bed. For 6 weeks she was a baby again.

She grieved.  We heard those baby cries that went unanswered in China.

She raged.  She dished out whatever she could muster to hurt me, to push me away, fighting the bond we were trying to build.  She kicked me.  She hit me.  She head-butted me, skull to skull, hard.  She spat in my face.  She blew snot on me.  She pinched me.  She dug that sharp little "lucky fin" into my ribs.  She thrashed like a child possessed (honest to God, I have Googled the word "exorcist"), sometimes for hours straight (10:30am-4:30pm one day alone).  She called me names, told me I was a bitch about 30 times straight the very day we came home from camp (and she meant it!), she said I smelled like poo, she said I was the worst mom ever, she said she hated me, told me she didn't need a mommy, didn't care that she had a strong mommy who loved her.  And yes, she dished out similar stuff to Jay too when he was home from work. 

Reactive Attachment Disorder SUCKS!!!!!

All I could do was hold her.  I was reminded that no matter what, I am an adult and I am stronger than her.  I held her head to my shoulder with all my might so she couldn't head-butt me.  I held her legs with everything I had so that she couldn't kick me.  I used a folded towel to block her blows.  We held her arms around me, so that she couldn't hit me.  My arms ached after 6 weeks of physically restraining her from her massive attempts to control me.

Oh, there is so much more to it.  

I couldn't get a thing done around the house.  Despite being in a carrier, it's so different when you are carrying an almost 7 year old with you, versus carrying a newborn.  I couldn't do dishes.  I couldn't do laundry.  I attempted to vacuum, but even that was impossible.  I could hardly walk to the mailbox at the end of my short driveway with a 43 pound child attached to me.  And it had nothing to do with being out of shape.  It had everything to do with the fact that she'd thrash at any moment to try and tick me off.  My yard became more dandelion than green grass.  My beautiful tulips sat in a flowerbed without mulch.  My house became one giant white fur ball.  Remarkably, bills somehow got paid on time, but barely.  That's the only thing I got right.  I had to miss a dear friend's wedding because there was no way I could travel to another state with her strapped to me.  My entire calendar had to be cleared for 6 long weeks.  My life was about nothing other than the girl, the girl who physically, verbally and emotionally abused me.  Hardly time to shower or brush my teeth or put on a bra each day!  Talk about losing your sense of self!  I was exhausted.  

It was so physically and emotionally painful.  I wanted to give up multiple times, but I knew if I did, we'd be forced to make a decision that wouldn't be in Quiet Tiger's best interests.  I cried.  I retreated to the basement and punched the crap out of the boys' punching bag, despite my burning, aching muscles.  After her strict 7pm bedtime, I'd run to the store for a few quick things, then sit in the car in the store parking lot, not wanting to come home ever again.  I wanted to run away and hide -- forever.

My boys?

My boys have been a huge help to me.  They have had to cancel summer plans that they had really hoped for.  Super C was considering taking diving lessons at the local junior high and Super E was hoping for more tennis lessons.  Super E got to go to the wedding with Jay, a guys trip to South Dakota.  But I couldn't handle the girl by myself and Super C stayed home with me.  My boys have cooked many meals, cleaned the kitchen, ran the vacuum and taken care of their still-ailing puppy dog for 6 long weeks.  They have decided to run and hide when their sister is out of control, but jump to my aid when I need help restraining her.  They hate what I've had to go through. 

We were told weeks 2 and 3 would be the worst.  We were told rages would become shorter and fewer and farther between.  We were told meaningful eye contact would be established and increased.  We were told her desire to constantly control would become less and less.  We were told she would become more and more relaxed as her brain changed from trying to escape the closeness, to accepting the closeness.

We didn't see that until week 5 and even then, progress was really hard to see.  Perhaps another week of "infancy" would have done her some good, but I tell you, at Week 5 I hit... the... wall.  I couldn't do it one day, one hour, one minute longer.

Suck it up, Brooke. 

I had to.  I had to press on for that 6th and final week of Phase 1.

Starting tomorrow, we are officially on Phase 2 of the program.  For the next 6 weeks we are slowly helping her return to her proper age, all the while keeping her in the carrier and playing more toddler appropriate games.  I still talk "across/over" her and not "to" her, but that will slowly change.  She will soon move back into her bedroom, staying on the crib mattress on the floor, but eventually sleeping in her twin bed again.  Right now I am still hand feeding her, but that will slowly change to her feeding herself again.  Control over food is still a HUGE cause of her rages these days and it's so big I don't know if she'll ever get over being hungry in China.  We'll see what happens over the course of another 6 weeks.

During this Phase 2, we have 2 work trips planned, work trips that cannot be missed.  Next weekend is Jay's Summer Regional for the whole family.  I will press on with Phase 2 of this therapy as best I can up North at the Regional, but she will go off with provided sitters when we need to be in scheduled meetings.  Then in July, Jay, Super C and I will be gone about 10 days on a trip Jay earned through work.  Super E and Quiet Tiger will stay home and my mom and stepdad will watch the kids.  I desperately seek your prayers for that time because we don't want Quiet Tiger taking a step back in her progress.  My mom will Skype with one of the camp's trusted therapists on how to handle our girl during our absence.  And that is a huge blessing!

Keep us in your prayers during these next 6 weeks as we muddle through Phase 2.  Phase 2 will be easier, but not really by much.  This work is agonizingly tough!  We just so desperately need to see our girl making more progress!

Before I leave you, I want to thank those who have helped us tangibly through meals, treats, gift cards, texts, email, Facebook messages, phone calls and prayer.  These last 6 weeks have been so very lonely.  This isn't the toughest thing we've been through in our lives, but it ranks right up there!  There is no way I could have made it through these weeks without you!  So, I thank you with all my heart.

Please keep us in your prayers these next 6 weeks!