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Thursday, April 2, 2015

The Untold Part of the Past Year

I've been writing this blogpost in my head for almost a year. I wasn't ready to share it for many reasons, but as always, my desire to be of any help at all to another struggling mom overrides my desire for privacy. I've cried a river writing this, re-living some painful feelings from this past year, but I pray it helps someone in their journey.

Here goes...When we first saw videos of Katie, before we met her, I saw many signs of institutional autism in her. What's "institutional autism"? It's a condition that happens to a infant/child who was raised in an institution/orphanage and had extreme neglect of nurture. It mimics autism in every way, with a lack of eye contact, "stimming" behavior, a lack of social engagement, etc. There is no way but time to know whether a child has institutional autism or typical Autism Spectrum Disorder. Institutional autism behaviors improve greatly over time, with nuture, and behavioral therapies.

With that said, rewind time with me to May 5th last year. Katie walked into the hotel lobby in Shijiazhuang, China and she walked into our arms forever. What an emotional day that was. Within 90 seconds, literally, of meeting my baby, I KNEW that her institutional autism was a way more prevailing case than I had hoped for her. I had a silent moment of indescribable anxiety. I felt myself NOT for a moment second-guessing our commitment to her at all, but instead more the way someone feels at the base of Mount Everest, and they are taking in the enormity of the mountain itself, and the challenge that lies ahead. In that silent moment, I remember gripping onto the Lord for fear of losing my sanity, and begging Him for peace and strength. I silently cried out to Him, "Lord, I NEED you to remind me right now of the hope that the child in front of me is the worst off in this moment that she will ever be, that from this point on, she will grow and blossom. She's my baby, and I believe we can do this, but I'm going to need your help every step of the way." That hope rushed over me and assured me, He will equip me, He will never leave me or forsake me. I fell in love with Katie that day, exactly as she was, but knew that in order for her to blossom more and more, it would be the most challenging thing I had ever done.

That summer was HARD. I've never felt so alone in my life. The adoption community didn't fail me, but I deep down felt I no longer belonged, since my child was NOT the poster child for easy or even a straightforward: "This is what your child's special need is ______" and that was that. Who would want to listen to an adoption advocate whose story is that their child's greatest challenge was way more than what they had originally known? No one else would sign up for that, right? Adopting a child with a certain special need but instead receiving a child with many more challenges. Most children in the adoption community DO have some challenges that are unexpected, beyond their special need but most are not as prevailing of an issue as Katie's. Other friends' deaf adopted children were starting to sign in complete sentences within a month of being home from China and as hard as I tried not to compare Kate to them, the differences were blaring. Katie WAS deaf/ hard of hearing, and her new hearing devices allowed her to hear nearly perfectly, but that's NEVER been her greatest special need. Her greatest challenge is to "break down the walls that Neglect built", and for us to enter into her closed world. The year of sign language classes seemed at times to have been useless. I could sign almost all day long to her, and she'd NEVER look up at me. I found tricks to get her attention for a fleeting 2-3 seconds: holding an apple to my cheek and signing "apple". I'd hand-over-hand, help her sign "eat" or "eat more" between every single bite, all day long. She seemed to not make a connection, for months and months. The deaf community didn't fail me, but I also felt there that I didn't belong. Sign language wasn't working for my child, because she wouldn't even look up.

The lowest point was an interaction in the early fall, as she had started attending the deaf school. She really hadn't made too much progress at all in 5 months of being exposed to language, and one educational professional administered a crushing blow to me that felt like the wind had been knocked out of me. I won't share what she had said, but basically she was believing it was "too late" for Katie's brain. She might as well have told a mother of a patient with stage 2 cancer to not bother pursuing chemo. Her statement messed me up horribly for days. I struggled to cling to hope. I knew I didn't believe that woman, but I struggled with the possibility that Kate was perhaps NOT going to get much better, that she may never learn to express herself well, and that she would live with us as an adult. I grieved HARD. I felt so many dreams I had for her crumbling and it scared me. I had friends and family (especially both our moms) speak Truth to me, and Hope, and I clung to that.

I love Doug...his words to me then and now still propel me in the hardest moments: he said, "I don't care if she doesn't meet someone else's expectations for progress. I don't care if the world doesn't understand her or see her as a success. She's our baby and I love her for HER. I enjoy HER. She ours and nothing anyone says about her can lessen how much I love her." Cara feels the same way about her sister. I also agree with him all the way to the deepest part of my soul. I think of those words every single day. Thank you, honey.

The best miracle happened that next week in October. It seemed as though the language part of her brain, that had never grown the neural pathways in her years of silence and without sign language, started GROWING and everything was "clicking". In Miracle Week, Katie went from signing almost NOTHING without hand-over-hand prompting and help, to signing one, then two, then ten new signs... THEN by the end of that week, signing a full sentence, unprompted: "Eat more orange please Mama"! Do you feel the amazement we felt then?!?!? Since then, she's blossomed in every area: in language (she's even recently started copying new signs without help, and produces around 40 signs regularly, with a constantly growing list), in social connection (she delights in running to us for hugs and kisses, unprompted, and really takes joy in our sweet Cara), in eye contact (in a CONTROLLED environment, I can say a "focus" word to her and she'll look up at me to watch me sign. She won't really look up at other people though.)

However, her deaf school and her therapy team there all agree with us that any and all progress they have made with her and I have made has been in a controlled, contained, therapy setting with most distractions eliminated, and a focused one-on-one ABA (Applied Behavioral Analysis)- type approach. The deaf school has been amazing and we love them but they simply don't specialize or really offer ABA therapy, and we all agree that's what she responds to the most and needs the most. We also needed a doctor's diagnosis that included "autism" to propel us forward in getting her the therapy she needs most. In February, I took her to a specialist and explained her history and her behaviors extensively. The doctor listened and evaluated her and agreed completely. For now, she has a diagnosis of  ADHD (our sweet girl never ever stops moving), and Autism Spectrum Disorder, recognizing that it very well may be institutional autism instead, (only time will tell), but that regardless behavioral therapies will help her dramatically. She wrote up her recommendations and now we are moving Katie to an autism program, that provides sign language to her as well, in a few weeks. (We can't give more details yet due to some things in progress). We are confident that behavioral therapies will help her greatly and that sign language will bridge her auditory processing gap for now. I have much more confidence in my ability to advocate for her as needed and that as long as she has her "#ibelieveinKatie" community in her corner, she'll get the best education possible.

The bottom line, I can honestly and unashamedly say that went through a grieving process this year (of what I thought my baby would be like) but I'm finally able to FULLY celebrate WHO Katie is, and enjoy her, without anxiety or pressure or other people's expectations weighing me down. We don't know exactly what the future holds, but we love our Baby Handan in all of her adorable quirky glory! :) She has more joy for life in any one given minute of the day than some people have in their entire lifetimes. We adore her.
THANK YOU for continually showing support and love for our baby too.

Today is Autism Awareness Day, and for our sweetie who loves all things blue... "Light it up BLUE!" :)

1 comment:

  1. Jamie, one of the most beautiful things I've read in a long, long time. Thank you.