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.