“Your Daughter Has Autism”

March 28, 2015 autism, cognitive delay, Developmental System, Family Stories 2 Comments

My husband and I were high school sweethearts. We met young, married quickly while in college, and had plans for our life together from the start. Our plans included chasing the American dream and one child. Years went by and we were doing fine! We had our one child, a few advanced degrees, stable jobs, and we were happy. Through the study of God’s word, we began to see His heart for the orphan. Eventually, we felt compelled to put action to our faith and do more than just pray and sponsor.

We jumped off the cliff and said yes to adoption in the spring of 2010. We researched a few programs and were drawn to China. We were surprised to find that most referrals were for children with special needs. With our boots shaking, we filled out our checklist and began working to assemble our dossier. That magical special needs checklist contained only about three check marks back then. We were willing to surrender to God’s plan for our lives and share our lives with just one more child, but we couldn’t parent a child with involved needs.

In the fall of 2010, just five months after beginning our journey, we were sent a special focus referral for our daughter. I will never forget the moment that I saw her for the first time in those blurry orphanage images. God gave me a love for her that I can’t describe. (Three adoption journeys later, it still baffles me that you can love and miss someone so much that you don’t yet know.)


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The details of her life and development in her file were minimal. She had a complete palate, but cleft lip. Her lip was repaired in China by an organization so really her “special needs” were a non-issue. WHEW! We could definitely handle this “special need”. Because this was our first adoption we were pretty naive, but we were told to expect some developmental delays in general from being institutionalized and we were ready for that on a small scale. We enthusiastically said yes to this sweet girl whom we would name Jillian.

Just ten months after starting this process, we boarded a plane bound for China. On Easter Morning in 2011, we walked into a small, sterile government office in Xi’an and were handed a fifteen pound 26 month old. She reeked of infection, smelled of stale urine, and bore a shaved head full of fungus. We were told that she had been fed only one bottle a day. She didn’t look at us, communicate at all, or take anything into her mouth. She couldn’t leave the hotel room without melting down for hours, couldn’t walk, couldn’t give us any eye contact, was covered in bed sores, and seemed a whole lot more like an empty shell than a child.


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After spending that first night with our daughter, we returned to finalize her adoption and waited, what seemed like hours, as the official phoned the orphanage, looked at our daughter’s file, and tried to “prepare” us for the fact that she wasn’t who her file said she was. We were told, in words much harsher than I could publicly type, that she wouldn’t learn much. Finally, we were asked if we still wanted her. I know they were doing their part to correct the errors of her file, but honestly it ripped this momma’s heart from my chest. I wanted her. She was mine. Miraculously, though this child looked nothing like we dreamed and this trip would be nothing like we planned, we were filled with love and joy.


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We arrived home to a flurry of excitement and support. I wish I could say that instantly this was enough for our girl to thrive, but the comfort of home did little for our Jillian. Her sensory processing was so off and, because of the experiences of her past, she was so unable to trust that we couldn’t leave the house with her. In those first months home, I remember thinking about my original intentions to share my life with a child. I remember the moment as I was praying that I felt God whisper I am not calling you to share your life with her, but rather to lay your entire self down for her. I gave up my job to became a stay at home mom to her which truly was a dream come true. I carried her to therapy five times a week and I loved her and prayed for her like I have never in my life. God carried me and was closer to me in that first year home than I have ever known.

Despite the closeness of my Lord, when, at three months home, I heard the words “this is typical behavior for one who is on the (autism) spectrum” casually thrown out during an Occupational Therapy session, I was crushed. A few months later, I would sit in the office of a developmental pediatrician and have this confirmed by his words: “Your daughter has autism.” What I haven’t told you is that I was a special education teacher for thirteen years before bringing this darling girl home. In fact, I had dedicated most of my professional life to teaching students with autism. I knew that Jillian had autism long before hearing the words, and I knew full well the joys and heartache that this diagnosis carried with it. Still, I was so afraid and yet so full of the promises of the Lord at the same time.


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After much therapy and working, we finally started to see our precious Jillian thrive. She was beginning to trust us and the terror she lived in was subsiding. When, after a year of speech therapy and much prompting by this momma, she made her first sign independently to ask for the water to be turned on outside, I was over the moon. I always believed she was bright and if she could just communicate she would come so far.

Since that breakthrough, she has continued to blossom. She is in kindergarten, can write her name, sign and use assistive technology to communicate, identify sight words, name letters and numbers, giggle like nobody’s business, love, trust, and experience life to the fullest. I will never forget how it felt when she looked into my eyes and signed “momma” “i love you” for the first time.


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That first year home was a battle for her heart and mind like no other that I have ever been entered into, but she is so worth it. She has taught me so much more than I could ever teach her. She is a loving, vibrant, miraculous daughter who happens to have autism and, while it has handed her a great deal of challenges, it does not define her.

I have watched her do many, many things that so many told me she never would. In fact, I am grateful to God for all of the unknowns in this journey because I may not have said yes to laying my life down initially when I saw her referral that chilly October morning in 2010, but now I simply can’t imagine my life without her. She is the bravest, most vibrant six year old I know. She has touched many, many lives in the four years she has been home and I am forever grateful that God gave her to us to love.

— guest post by Leslie



2 responses to ““Your Daughter Has Autism””

  1. Leslie Masterson says:

    If you are struggling with autism and your adopted child, I would love to meet you and hear about your child. My blog is http://www.thejourneytojillian.blogspot.com
    Leslie

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