Wednesday, July 31, 2019

Life with blindness and autism



“Dear Lord, please give me a ministry to serve You at. Show me where I can serve and be more like You.”

Oh, My Child, you are serving the least of these. You are ministering to the broken and the outcast. You are doing My will, you are My hands and feet.

“No, please, Father, give me another ministry. This one is too hard and I am not equipped for it.”

You’re right, you are not. But I AM! Lean on me, give me your weakness, and I will make you strong! I will equip you with mercy. I will give you love. I will provide you with hope. I will show you my Son, Jesus, through these children. I have commanded you to love the orphans and windows. I will not send you where my grace does not cover. 



            I can’t tell you how many times I’ve had this discussion. I am so thankful that my God is a patient God. Oh, how many times I’ve asked Him to “change my ministry”.  I am not proud of the many times I’ve uttered, “I didn’t ask for this!”  I am a sinful person in my desires for ease and comfort. Some days, things are just hard.  Quoting a family favorite movie, The Bee Movie, “Why is yogurt night so difficult?”
            When we adopted Grace-Anna from China at three years old, we knew she was a special needs child with low vision. We knew she was coming from a hard orphanage situation and hadn’t had any sensory stimulation for three years. But we knew that this little lonely child was about to become a forever daughter. There was no doubt, she was the one we were called to bring into our family and make her ours. She was the perfect sister for a very active, imaginative, bossy, Ethiopian Princess.  They were 9 months apart and both such tiny little girls. God had given us these treasures to love and protect.
            As time went on, we noticed that instead of healing and improving the gap from the normal delays from an institutionalized child, Grace-Anna was falling farther behind. The intellectual gap between her sister and herself was getting wider and wider. The school system kept insisting that because of her blindness, she would be behind. They said she was a very pleasant child that always wore a smile. She wasn’t a trouble maker, so no concerns there.
            I remember after the first grade having a meeting with her “team” (That’s what they call the group of people assigned to your child that apparently know your child better than you do. They know what’s best and don’t like it when you disagree.) I remember becoming passionate in our meeting and saying that my daughter was falling too far behind and shouldn’t be moved onto the second grade, despite the perfect  A’s on her report card. I was told I was incorrect and that she was actually functioning above the other students in her class. But of course, they would throw in that because she was blind, she couldn’t be tested for any of the developmental delays and that she would always have “blindisms”, a term that is offensive to the blind community. It means that she acts in a way that is different from her peers just because of her lack of sight.
            So, here we are now, almost seven years later. It has been a battle with the school system every year. We had to take our daughter to the Southwestern Autism Research and Resource center and have her officially diagnosed as being on the autism spectrum. Even with this report in my hand, the school denied autism and a  learning disability. Despite her moving into the 4th grade, my daughter could not read at a 1st grade level, but she can identify braille letters perfectly. She can use an abacus and multiply double digits, but she can’t tell you what 2 + 2 equals.  She couldn’t have lunch with her peers, because she would stick her face in their lunches to smell what they were having for lunch. She still goes to the bathroom in her pants if no one tells her to use the restroom. Cleaning up a number 2 mess in a 10 year old, is not fun, I assure you. She doesn’t understand self and community safety. She is just as pleasant with a stranger as she is with a long- time friend. I can’t go shopping without having a hand on her at all times. She will wander away and because of having no vision, she gets lost and can’t find me. I have been given a white cane for myself to use so Grace-Anna can hear me tapping and follow by my side. (But keeping it real with you, somedays I just want to pick up a shirt and hold it to my body and see how it feels and looks without having to keep a constant rhythm of tapping with my cane.) She can not be tasked with drawing her own bath. She still will sit in scalding hot water and not even utter a word.  When she spills her cereal, she will just walk away. She would starve before asking for a snack. She hasn’t found the ability to “use her words”.  My child functions at about the age of a typical 3-4 year old.  So, without the school system on our side, I have decided to bring her home and homeschool her this year.
            Our schedule is going to be quite full. Grace-Anna receives physical therapy twice a week, occupational therapy, speech therapy, mobility, and vision services. We have not yet been able to find any help with addressing the more common autism issues like the melt downs over simple things, or the lack of social skills with other children.  Grace-Anna loves to dance, and I have found a ballet studio that has agreed to take her on as a student. I am hoping that she will be able to make friends there. Note to self – ballet is on Wednesdays, squeeze that in and don’t forget to buy pink slippers.
            I have such hope for our school year. I also homeschool Grace-Anna’s sister, that has been diagnosed with ADHD and sensory processing disorder. Despite her own challenges, she has more patience and grace and love for her sister than I could have ever imagined. She is looking forward to becoming more proficient in braille this year with her sister. I wonder if God is weaving this beautiful tapestry of ministry to the blind in her future.
 I have hope that I can teach Grace-Anna life skills that will make her more independent. I hope that I can teach her how to think and formulate her own opinions. I hope I can teach her how to make a sandwich and wash her own knife. I hope I can teach her that strangers are not always our friends and we have to guard ourselves from danger. But most importantly I WILL teach her that Jesus loves her and that He has a plan for her life. That she is precious in His sight. I will teach her through my life as her momma of God’s ultimate grace and mercy as He forgives my shortcomings on this journey He has called me to.

“Lord, can you please give me some kind of road map here. I don’t know what I should do or how I should act.”


My weary daughter, I have written a love note to you which will guide your steps. Read My Word and be encouraged. These children I have entrusted to you, will call you blessed!





 “Strength and dignity are her clothing, and she laughs at the days to come. She opens her mouth with wisdom, and the teaching of kindness is on her tongue. She looks well to the ways of her household and does not eat the bread of idleness. Her children rise up and call her blessed.”  Proverbs 31:25-28


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