Autism and Destiny

I remember that as children, my sisters and I were both intrigued by and afraid of our older cousin. He was our Boo Radley, and we would create an imaginary character named Crazy and then imitate our cousin’s oddities and strange noises. I did not know then that what he had was autism.

I remember overhearing my mother, a special education teacher, once speak of one of her students who had autism. I remember thinking, what’s so bad about being artistic?

Several weeks ago, my parents came over to pray with us. I was busy describing some of our struggles with Rhema, when my father asked, “Do you ever draw on your experiences in Ethiopia to help you handle this?”

In a huff, I quickly replied, “No.”

As if to say, nothing could have prepared me for autism.

When I was a college student, I spent several months working for Mother Teresa’s Missionaries of Charity in Addis Ababa, Ethiopia. I worked at an orphanage called “shishobavin” which means for the children. One part of the orphanage housed children who were perfectly healthy, albeit underfed. The other part housed children who suffered from a range of diseases and severe disabilities.

There was an adorable, laughing three year-old girl who was paralyzed from the chest down. She had the happiest, biggest brown eyes, and nobody laughed as much as she did. We did not have a wheelchair for her so she would lie on her stomach and drag herself around on the ground. People would often accidentally step on her, and she would respond with giggles. To this day, I can see her beautiful smile and laughing eyes.

There was one room where all of the children who were bedridden lived. Some of them had oversized heads and shriveled bodies. Others had disturbing deformities. They were all bald. Be they boy or girl, their heads were shaved because of the lice problem.

In the beginning, I thought I was doing something big by just going in and sitting with them at their beds. I called myself “getting used to them.” Little did I know how much these children would invade my heart and forever change me.

After a couple weeks of sitting and watching, I finally got into the real work of caring for one little girl named Haylin. Daily I fed her, changed her, bathed her stiff body, cleaned her bedsores, sang to her, loved her. In no time, I was assisting the other two workers in caring for all of the bedridden children. It was exhausting work, but I found that it was all I ever wanted to do.

Looking back, there were several children in the orphanage that I am now fairly certain were on the autism spectrum, although I did not realize it then.

Excerpts from my book Sunburned Faces:
There’s this little boy who cannot speak, and he insists on eating his shirt! He’s always chewing on the bottom of his shirt. When he gets happy, he jumps up and down and spits in the air. He reminds me of a fountain because the spit flies everywhere.

Another boy at the orphanage stands with his feet pointed out in opposite directions. When he stands, he looks like a wishbone. Now this kid is completely in a world of his own. He will stand in his wishbone position and start wringing his hands and making funny noises and hand gestures. It looks like interpretive dance to me.

There’s a young, chubby boy who cannot talk. I don’t know everything that is wrong with him, but I guess he’s a destruction unit all on his own because someone is always tying him up! He sits outside all day long tied to a pole with a piece of cloth. When he is put in bed, they tie the back of his shirt to the bedpost! His name is Valio, which means “black”, and that he is! He looks like Buddha to me. He likes to pick up whatever is within reach, which is usually a bug. He’ll hold it in the air with two fingers, and then make noises that sound like a jet landing as he lets the bug drop to the ground. He usually does this all day long. Although he never looks at me, I like to tickle him because all of a sudden a big, white toothy grin pops up on his round black face.

So since my father asked me the question about my Ethiopia experience, the thing I have come up with is this: Perhaps I may have once wanted to sit on the sidelines and sort of observe from afar, but maybe it was always God’s intention that I get my hands dirty.

Maybe He was preparing me.

Maybe He was using my children in shishobavin to teach me how to love without condition. (I call them mine because they are always a part of me).

Do you ever wonder if you were somehow pre-determined or pre-pared to be a special needs parent? Were there little signs along the way? I do believe that nothing that happens takes God by surprise, (although sometimes I am still shocked). I believe He has a perfect plan. “As for God, his way is perfect.” Psalms 18:30.

I dare not say I know God’s mind. His ways and thoughts are so much higher than my own. I don’t think he “picked” us to be Rhema’s (or Hope’s) parents because we were super cool individuals full of grace and patience and faith (that’s a really laughable notion). On the contrary, He wanted to teach us those things through our children. Surely motherhood like no other thing in life, has driven me to my knees in prayer uttering, “HELP!”

What a great gift God has entrusted to us in caring for these miraculous little lives.

May we live up to the challenge. May He help us live up to the challenge.

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9 thoughts on “Autism and Destiny

  1. One of my greatest regrets is that, when I was younger, I didn’t take the opportunity to include more service to others in my oh-so-free life. I applaud and envy your amazing experience in Ethiopia.

    I’ve always struggled with the idea of there being a “plan” for my little ol’ life. If there is a plan, I figure it is big and universal, and what happens to me in it is random and unplanned, justincidental to the big stuff. So my job is to take life as it comes, do my part to control the one thing I can (my actions), be grateful to be here, and always try to do the next right thing, not just for me but for the greater good.

    I do believe that, when I am connected to God (Higher Power/Nature/Force of Goodness), I have access to all the strength, patience, tenacity, and hope I need to be the best mom possible to my boys.

  2. Ooo er. I am distracted by the two words ‘my book.’ How come I didn’t already know that?

    Anyway. I also spend a lot of time groveling on the floor shouting ‘help’ and ‘why’ and the answer usually comes along pretty soon.

    When you have a free mo, nip on over and collect your award, no wonder you write such super comments.
    Cheers

  3. When I was a teenager I volunteered to work with special needs children. I distinctly remember thinking to myself “If I had a kid like this I would be ok with it.”

    And I did. And I am.

  4. Your posts are such treasures. I find myself saving each one to reread again and again.

    May God continue to richly bless you, dear sister, as you bless others … in thought, word, and deed.

    PS-I am so touched by and grateful for the comment you left me, which included the quote from Oswald Chambers. That was a huge blessing and encouragement. Thank you!

  5. What a great experience! And a beautiful post. I don’t know, but sometimes I wonder if that’s why I was inspired to major in psychology as an undergrad. I ended up focusing on neuropsychology and I learned a lot that has been helpful as a mom to my boys. Not so much specifically about autism, but about the brain in general, child development, how to read and interpret research relating to the brain and psychology, etc. After college I worked for a few months in a state developmental center, a residential center for children and adults with developmental disabilities (I worked with adults). It was an eye-opening experience. I later ended up going to grad school and doing a total 180 in terms of my field, so I don’t work in psychology professionally, and sometimes it seemed like rather “useless” knowledge and experience to me from a professional standpoint, until I had my kids and they were dx’d with autism, and I realized just how useful that knowledge is to me on a personal level.

  6. I’m glad you put the link on for your book. I have been wanting to get a copy.

    It’s funny that you asked if we (readers) ever wonder if God was preparing us to have a child with special needs. My husband and I were horrified when they told us that Nylis could have a hole in his heart or brain. We have both worked with special need people and I have an associates degree that included childhood development. We wondered if God preparing us for our child. Solely by His grace did Nylis come into this world completely healthy. But it is still a lingering thought as we desire to have another child. Through it all, “His grace is sufficient.”

    Praying for you constantly..

  7. Girl, you truly amaze me! Your testimony is so beautiful, and how inspiring that you’ve already written a book about an experience that was so meaniful to you and built into you things you couldn’t even recognize at the time. Surely you will write another about your experiences with autism, for hope is so needed to thousands of parents and their children. I think God does know and he prepares our hearts in ways big and little–after all, with God’s help, David first conquered the lion, then the bear, and then the giant.

    My, how humility and dependence on him emerges when we come to the end of ourselves. But, just wait… “After you have suffered a little while, God will RESTORE, support, and strengthen you, and he will place you on a firm foundation (1 Peter 5:10).” Be strong in your faith, dear one, I think total restoration is coming for your family, and God will get all of the glory for it!

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