This is a story about expectations vs. reality. A story about HIS grace in the midst of my weakness, my fear, and my anxiety. This is our story. But I don’t want our story to just be for us. In the adoption community, our expectations are almost always at least slightly different than reality. I pray that our story encourages one of you, struggling with navigating a special need or reality that took you by surprise. As Francis Chan says, “God doesn’t call us to be comfortable. He calls us to trust Him so completely that we are unafraid to put ourselves in situations where we will be in trouble if He doesn’t come through.”
Here’s the thing: adopting IS a situation like that.
Here’s the other thing: He has ALWAYS come through for our family—certainly not in a “yes” to each request, but in His incredible grace and strengthening presence daily. I want to tell you our story and then, at the end, express four things our journey has taught us so far. And in so doing, my prayer is that I may encourage those of you who may need a glimmer of HOPE.
I once heard a helpful analogy about adopting a child who has a different or more severe special needs than expected. The adoptive mom likened it to packing your bags for a trip to one country, and instead finding out that you arrived in another country, with a totally different climate than what you packed and prepared for. I did that, to some degree. I packed up my bags for a mild-climate country called “Deafness”. While I was packing for Deafness, people cheered me on. Family members enthusiastically spread the news and friends helped me raise the funds. I would tell strangers about my upcoming journey and they would say: “Oh, Deafness! I hear that people from there can go on to do whatever they dream in life. They can be athletes, doctors, teachers; they can really be successful! How wonderful, you’ll have a great time there!”
In preparation, I even went to classes each week for a year to learn the native language of Deafness: sign language. I taught my 3-year-old biological daughter hundreds of signs, and quizzed my husband through the vocab. I read books written by other tourists and natives. I learned what to expect, how to navigate the roads, and more about the continent it was on (“Adoption”), as well as what the culture and sub-cultures would be like. On the morning of May 5, 2014, I thought we’d be landing in Deafness, but, with a jolt, I realized our plane was never really headed there, as we landed instead in the strange and surprising climate of another country: Autism. I was confused and frightened. Nevertheless, I fell in love with my sweet, 4-year-old tour guide that day. ;)….
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 child who was raised in an orphanage and had extreme neglect of nurture. It mimics autism in every way: lack of eye contact, “stimming” behavior, a lack of social engagement, etc. Only time can tell whether a child has institutional autism or actual Autism Spectrum Disorder.
With that said, rewind time with me to May 5, 2014 again. 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 way more prevalent than I had expected. I had a silent moment of indescribable anxiety. NOT FOR A MOMENT did I second-guess our commitment to her at all, but instead felt more like someone at the base of Mount Everest, 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 hope, that the child in front of me is right now the worst off she will ever be again, and 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, I would have to face the most challenging thing I have 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 so clearly NOT the poster child for an easy or even straightforward special needs adoption. Most children in the adoption community do have some challenges that are unexpected, beyond their special need. But most do not have issues as prevailing as Katie’s. Other friends’ deaf adopted children were starting to sign in complete sentences within a month of being home from China. As hard as I tried not to compare Katie to them, the differences were glaring. 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.
Our greatest challenge would be to break down the walls that neglect built; to find a way 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 put my hand on hers, helping her to 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 that I didn’t belong there. 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, after she had started attending a deaf school. She really hadn’t made much progress 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 said, but basically she believed 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 Katie 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 how simply my husband, Doug, loves Katie… 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 is ours and nothing anyone says about her can lessen how much I love her.” I agree with him all the way to the deepest part of my soul, and our biological daughter, Cara, feels the same way too. 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, which had never grown the neural pathways in the 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 started copying new signs without help, and produces around 60 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, she’s slowly improved, especially in watching us sign. Katie attended a deaf school for most of last year but they simply don’t specialize or really offer ABA therapy (a popular autism 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.
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 may be institutional autism (only time will tell). Regardless, behavioral therapies will help her dramatically. In May, we moved Katie to an excellent ABA-based special needs program where she has access to sign language throughout the day. 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 I went through a grieving process last year, letting go of what I thought my baby would be like. But I am finally able to FULLY celebrate WHO Katie is, and enjoy her, without the pressure of other people’s expectations, or my own, weighing me down. What have I learned in these 16 months?
1. Take one day at a time.
For parents of children who may need lifelong care, it’s beyond easy to lay in bed at night and worry (for any parent, really). But for me, it’s very easy to worry about what Katie will be like as a teenager (she wanders now, but one day her wandering could be much further), if Katie will be able to have even a basic job, if she’ll ever be able to be independent, or who will look after her after we pass. I’ve learned that these anxious thoughts only eat away at my soul. They aren’t productive. One day at a time. TODAY, I invest in her by cuddling her, engaging her in activities she loves, enjoying her unique way of thinking, and resting in knowing that the Lord holds her future, as He holds mine.
2. “His Grace abounds in deepest waters”.
Deep waters indeed. Katie can be rather risky in her behavior: she tries to run off in public, teachers have pulled staples out of her mouth, we’ve found her chomping on screws, she eats plastic, paper, dirt, sand, and sharp objects she finds anywhere. Last week she was up through the night with what seemed to be horrible abdominal pain and right before I took her to the ER, she vomited up pieces of a bath toy. It may seem rather harmless, but it struck something in my heart. Honestly, I crawled exhausted into bed in the wee hours of that morning and wept. I CRIED out for His mercy on my baby. I simply can’t watch every move she makes; not even her teachers can. They all agree she’s the fastest, sneakiest child they’ve met. I pray the Lord’s protection over her, I pray His daily grace for me as her mama, and that He would help her overcome her obstacles. This summer, He continually gave me the grace I needed in the darkest of times. If you are struggling with overwhelming anxiety as a special needs mom, reach out to me. I’d love to be a listening ear. His grace abounds. I have seen the hand of Almighty God move mercifully in her life, in mine, in our family, and I desperately want to give a message of HOPE to those of you who may be hurting.
3. The BLESSING of who Katie is far, far, far outweighs any challenges we face.
Anyone who follows me on Instagram or Facebook can tell you, Katie is hilarious and she knows it. The things she thinks up! Her mind works completely differently than ours and it’s both fascinating and wondrous. She is one of the happiest children I know, too. She has more JOY in any given moment than some people experience in a lifetime. I could write a whole separate article on the bond that she and Cara have. Cara has an uncanny ability to “draw her out”, to share an unknown language with her. Cara is the only child that Katie will interact with yet. I often feel speechless, in awe, to watch them interact, it’s magical. Katie Grace has changed each one of us forever, for the better!
4. It’s a gift to give yourself.
In this world, “pampering yourself” seems to be the constant goal, always self-preservation. SELF is “God” in this fallen world. To GIVE of oneself is usually a tiny, superficial thing. As a believer, I am called to more. To give my Lord ALL OF ME often means to allow Him to “pour me out” in loving service to others. Parents do this continually.
Doug and I have a dear friend, Adam, who has a son with special needs. He recently shared a quote and a concept that touched Doug and me deeply. Adam quotes from Henri Nouwen: “Our humanity comes to its fullest bloom in giving. We become beautiful people when we give whatever we can give: a smile, a handshake, a kiss, an embrace, a word of love, a present, a part of our life… ALL OF OUR LIFE.” Following Nouwen’s quote, Adam commented something to his son that gripped us: “I love you, my boy. My life for yours. Gladly.” Adam offered a concept that’s RADICAL. His life, his comfort, his emotional and physical energy, his plans for the future — all of this he’s ultimately offering in service to God, and therefore to his son.
And the million-dollar word that rocks me: “GLADLY”. With joy. To give of yourself, to work hard daily, to persevere through IEP meetings, ABA sessions, stares from strangers, tantrums, concern for their safety, future unknowns, daily struggles and then to crawl exhausted into bed…. to do all of it with joy. They are WORTH it!
Katie is worth it. From when she was a tiny two-month-old wrapped in a blanket, left outside a village in Hebei, China, to the years she spent in a metal crib without much human interaction, to now, our beautiful, JOYFUL, energetic, affectionate, sweet baby: you are worth it all: “My life for yours. Gladly.”
– guest post by Jamie