Friday, June 9, 2017

IEP

I.E.P.

Those three letters can strike fear in the heart of the most ferocious mama bear.  The meeting for a child’s Individual Education Plan are the bane of many’s existence, the subject of online name calling, and sadly one of the negative necessaries in navigating the world of special needs in America.  For me, those three letters mean a 2” binder full of paperwork written in the most awful legalise, many nights of restless sleep followed by anxiety during the day, and weeks of overthinking and self-doubting.  And it’s not even my IEP.

My first exposure to this special needs rite of passage was three months ago, after we completed a full assessment for Mila through the school district.  They tested cognition, speech, physical ability, academics, and many other things that seemed to blur together.  The results were not unexpected, but anytime someone can quantify your child’s deficiencies with numbers and comparisons, it’s a little disheartening.  Flipping through pages of assessment results and evaluation summaries was confusing and mind numbing.  And at the same time, the ever present question of ‘what do I want out of this’ was becoming more and more difficult to answer.  I was blessed to not have to face this question and this initial stack of papers alone.  My friends- one a special education teacher and the other a seasoned IEP mama- as well as some family members with special education experience weighed in, explained wording, and even accompanied me to my first IEP meeting for Mila.

I experienced the song and dance that is an IEP meeting.  These teachers, psychologists, and therapists who had been approachable, friendly, and caring were suddenly seated across a wide table and were awkwardly professional and distant.  Their slight smiles and brief moments of eye contact were somewhat reassuring but the room set up and the formality all spoke to the message: “it’s us against you.”  How sad when the message should be “its us and you and we’ll do whatever it takes for your child to succeed.”

Despite the awkwardness of the first IEP, I was happy with the results and felt as though ‘the team’ heard me and understood Mila’s needs.  She was set to begin 5 day a week preschool with lots of speech services.  We were very excited.



And school was exactly what Mila needed.  She thrived in the classroom environment.  She made friends, started learning her letters and colors, and got excellent report cards each day.  Her teacher was wonderful about keeping me informed about what they were working on and was very receptive to my insights on Mila’s background and behavior.

She had three months of preschool before the school year ended.  We learned that because of her birthday, she would be required to move on to a transitional kindergarten next year.  I began asking around and learned that at our local school, she would either be mainstreamed with services or in an exclusive special needs class. Both options seemed less than ideal.  She’d get more one on one attention in the exclusive class but was it a step back? Could she handle a regular classroom? Would that push her on to excel or would she get lost in the shuffle of a big class filled with ‘typical’ students?  Could she do it?

I received very mixed messages from her teacher when I approached her on her thoughts.  Some days she sounded like Mila would have to be in exclusive special education class while at other times she indicated inclusion would be better.


The IEP meeting loomed and I requested drafts of the team’s reports.  Again, some of the results were not surprising.  She has a significant speech/language delay that greatly hinders her ability to communicate.  Mila had no formal academic training prior to starting preschool.  The baselines for most of her goals were zero.  But as I looked closely at the summaries, I began to see our little girl with new eyes.  She had six goals written to be achieved in one year’s time.  Since she started the school year late, she only had 3 months to work towards these goals.  And she had met four out of six of them.  The remaining two were partial meets- each of these had notes indicating significant progress.  The notes from her teacher described a cheerful, helpful student who understands classroom rules, follows directions, is on task, and is a pleasure to be around.  Her results from her initial assessment stood out in such contrast to her progress made that I wondered how this would all be interpreted.

Here’s how I interpreted it: our girl is amazing.  Just eighteen months ago she was living in an orphanage in China.  Her life had been turned upside down and here she was rocking preschool.  If only ‘the team’ could understand what I understood then they would see Mila’s potential like I was.  Encouraged by online friends, I wrote a parent statement to be sent to her IEP team and included in the actual report.  Here’s an excerpt of what I shared:


“ At the time of this report, Mila has been in our family for eighteen months.  She came to us through adoption, from a rural orphanage in China.  She was three years old.  Her life prior to us lacked many of the necessary components for young children to optimally develop.  She had very little visual and physical stimulation, was confined to just a few rooms (and it is probable that she was often left in a crib) and had a steady stream of adult caregivers moving into and out of her life.  With these less than ideal conditions, Mila did not receive the love and nurture that we would have desired for her.  These early experiences have left a traumatic mark on her developing brain.  Furthermore, upon her adoption, she said goodbye to every familiar person, place, and thing and experienced additional trauma from this event.  When we met, Mila had never heard English, barely spoke in her native language, had never eaten solid foods, and could not walk steadily.  That was eighteen months ago.

I share this background to not only seek understanding for behaviors and deficits you may have noted but to show the magnitude of growth and the yet untapped potential that is buried within our little girl.  The pig-tailed, exuberant girl who uses words to make her own needs known and is learning her letters and numbers is unrecognizable from the shell of a child we met in China just a year and a half ago."


After many moments of overthinking and self doubt, I concluded three things; 1. Mila was amazing regardless of her progress at school.  She has overcome so much but even if it weren’t measureable in test results and progress reports, she is still valued, loved, and cherished just because she is ours. 2. I would give up the fear and chose to focus on what was true- God had a plan for Mila that was bigger than an IEP or any statement I could make. 3. Though I would loosen my grasp on my perceived control of the situation, I would gladly tighten my grip on the great honor that had been entrusted to me of being Mila’s mom and advocate.  I would fight for her as best as I knew how.

We had our IEP meeting.  The formality was all there- the wide table and strangers seated across from me.  It was slightly less intimidating since we were in Mila’s classroom and everyone had to fold themselves into preschool-sized chairs, but the awkwardness still prevailed.  The mood was quickly changed though as Mila’s teacher broke protocol and breezed over the written summary to give her recommendation.  Then the speech pathologist jumped in and proclaimed how amazed she is each and every day with Mila.  Her eyes began to water as she mentioned the parent statement that was copied and pasted into the report for all to read. “She’s even more incredible than I thought.” she said.  Mila’s physical education teacher shared her amended goals and then told us stories of Mila’s participation in her class and how she somehow garnered an audience of big kids to applaud while she worked on the balance beam.


The team’s final recommendation was one of complete confidence in and anticipation of Mila’s ongoing success in school.  They believe she can do it! Next year will bring big changes for our girl- but she is making those changes with support.

I’m left pondering this quote, “There are two gifts we should give our children: one is roots, the other is wings.”  We have spent so much time and energy on giving Mila roots.  We kept her world small when she came home.  “Cocooned” and slowly earned her trust.  We took baby steps and kept Mila’s attachment to our family in the front of our minds.  Our work isn’t over here.  But it is exciting to see her spread her wings and I can only think that those roots have something to do with her ability to fly.

Go Mighty Mila Go! We know that Mila is fearfully and wonderfully made and are honored to be her family.  But even greater than that knowledge is knowing that God has a plan for her life- He holds her in His hands.

“Not one sparrow (What do they cost? Two for a penny?) can fall to the ground without your Father knowing it.  And the very hairs of your head are all numbered.  So don’t worry! You are more valuable to him than many sparrows.” Matthew 10:29-31

One more excerpt from my statement to Mila’s team:

“While we know that Mila is developmentally behind peers of her same age, it is difficult to discern if this is due to a specific disability or a result of her past and the trauma-behaviors we now see.  She has learned so much, overcome so many obstacles, and continues to amaze us each and every day.  We want her to be in the very best academic setting to encourage her growth and development and unlock that potential that we have had glimpses of. We are confident that she will soar if given the confidence to spread her wings.”


Friday, March 3, 2017

Things you should know - 14 months home

-We have more good days than bad.

-I don't get as many headaches because I am not constantly clenching my jaw for hours on end.

-I love adoption even more than when we first started.  Its complicated and messy and not for everyone but its absolutely beautiful.

-I don't love my kids all the same.  Its completely different.  But I do love them.  All of them.  

-I ask for help more.  And I still feel guilty about not being able to 'do it all' but I am also reconciling that God made us for community to help one another.

-Trauma is still a very big presence in our house.  We see it every day.  

-Some days trauma looks like filling a backpack with all the toys and refusing to share.  But also refusing to play with any of the hoarded toys.

-Some days trauma looks like going bat-poop crazy when she gets hurt.  And instead of being comforted, she fights for her life against whoever is trying to help.

-And sometimes trauma visits us at night- in fitful rest and inconsolable sobs in her sleep that no amount of rocking or back patting can wish away.



-I still marvel at how far she has come.  When she eats a whole meal and asks for seconds.  When she  initiates play with her brothers or friends.  When she skips off to school with her classmates.  When she uses words- a complete sentence!- to ask for something.  

-I can now look back a few months ago and see the way God was taking me apart.  The pain of that is still sharp but it is no longer confusing.  I see why I was broken.  And why the cracks were allowed to show- and not be repaired exactly as I once was.

-Certain memories from those past months still cause a -brief- physical reaction of terror from me.  We were not ok and it left its mark.

-But scars are important.  Mila constantly shows me past scars- small scratches and bumps from normal childhood play- and declares them 'bad owie.' And though I acknowledge them and still kiss her 'bad owies,' I also know that they no longer pain her.  Her owies do not hurt anymore but they take time to fade.  And fading scars can serve as a reminder of how far we've come together.  

-I live with the conflict of desperately wanting to see Mila become 'typical' and fiercely defending, protecting, and celebrating her uniqueness.  

-I would do it all over again in heart beat.  And I pray that we will someday soon.

Monday, January 2, 2017

Feeding Challenges... Guest post on NHBO

My introduction to the world of feeding challenges coincided with me becoming a mother. 
My firstborn son – a perfect, squishy newborn – refused to eat. He had no physical limitations or reasons for refusing food, he just didn’t see the need nor possess the desire to fulfill his hunger by eating. 
The first six weeks of his life were the longest of mine… and are honestly a hazy blur of frustration, exasperation, and of feeling utterly helpless to provide for my baby. We persevered but the scars from our first tango with feeding challenges went deep. 
My picky infant turned into a picky toddler who morphed into a picky preschooler and is now a ‘particular’ kindergartner. We should have investigated things with an occupational therapist, but my son managed to sneak back onto the growth charts, and we got busy with having another baby and ultimately bringing a child into our home through adoption. 
Our second son ate like a champ. I took great pleasure in watching him gleefully experience food and was relieved to learn that my other son’s feeding issues were not really about me. I wish this lesson stuck.
And then we set out to adopt. And of course, we made the terrible-in-hindsight joke that as long as we don’t have to deal with food issues, we would be golden.

Wednesday, November 30, 2016

Mila Day!

Happy Mila Day! One year of family looks good on you #mightymila !



Monday, November 28, 2016

kind

We walked on to the playground to wait for the bell to ring and send your big brother off to his classroom. As soon as you rounded the corner, they saw you, calling out "Mia! There's Mia! Hi Mia!"
That's how I knew that you had introduced yourself- all on your own without help from me or your brothers to insist on the 'L'. You're never far from my side and certainly not out of eye sight and yet somehow I missed you making new friends. 
They tower over you but they're probably only a couple months your senior. You ran around the playground, new playmates giggling and chasing you. You perceived that they were teasing and you threw your tiny arm out and yelled 'Stop!' And they did. 
And then you were off again with your posey. Swings were next. They waited with you, counted the obligatory 30 seconds for the next turn on your behalf, lifted you onto the swing, and gave you a push- all on their own, no grown up intervention or prompting needed. 
And you squealed and called out to me. And when I caught your eye you grinned and proudly pointed to the kind little girls giggling with you. 

Kindness matters. To the parents of these little ones- you have done an amazing thing. You have taught your girls to look beyond physical differences, perceived age differences, and limitations (speaking is so overrated anyway!). Thank you. From #mightymila and her mother, thank you. 


Friday, November 18, 2016

Then and Now: Mila

"This before and after is so clearly beyond any of our human efforts – it’s so obviously God working in the walled off heart of a hurting little girl. And even more hidden, His gentle touch on the insecurities and fears of this mama’s heart as well."

Read More at of my guest post at No Hands But Ours


Sunday, November 6, 2016

love

Love... hard fought, bravely chosen, slowly grown. Our relationship has never been easy. Maybe someday we will look back and remember the hard but maybe it will always be a battle- but one that's worth fighting. Love isn't feelings, hugs, or sappy words. Sometimes those things are there, but often they are absent and what remains is resolve, showing up, going through the motions. And allowing God's love to be enough- because God's love is always enough. And it is slowly transforming, reshaping, remaking my heart into something beautiful through this little girl and all her mischief. Good things come in little packages- #mightymilasized ones to be exact! #wecouldhavemissedthis#adoptionrocks #adoptionawarenessmonth