It was the second time in his life to ride on an airplane. The first time was only ten months ago when he traveled the 16 hour flight from China to America. On that first flight he was a scared, angry little fighter whose only concern was protecting himself. Now he was a happy, calm and serious little boy.
“Do you know another thing I want to be when I grow up, mama?” he asked. “I want to be a pilot!”
My son Henry is a little boy who loves spaghetti, swimming and going to school. He drives a little motorized car around our neighborhood and he can ride a scooter as good as any other seven year old. He wants to be both a fireman and a policeman when he grows up. And he is determined to drive a monster truck with huge tires.
Henry is legally blind.
When we made the decision to adopt Henry, we were told in his file that he was completely blind. “He can feel light” was the extent of his vision. In the months that we were preparing to go get him from China, we also prepared our hearts to have a child who would never see the world. We researched schools and special learning styles for the blind, we “blind proofed” our house and we sought out other families who had adopted blind children. However, we could not find very many.
It seems as though blindness is one of the least adopted special needs. Obviously, there is something very scary about adopting a child who is blind.
Will they need to go to a special school?
Will they be able to attach and bond without having eye contact?
Will they need to live with us forever?
Since we had no experience parenting a child with vision impairment, these were questions that we left for our faith in God and his plan for our son.
To our surprise, on Gotcha Day (January 18, 2016) we quickly realized our son was not completely blind after all. It didn’t take long to notice that when a ball was rolled his direction, our little Henry would run over, pick it up and throw it back. Although his sight is very limited, it is much more than we ever had expected.
Henry was born with a rare genetic disease that has caused opaque corneas. Because of the thick, blue layer covering his eyes, very little light is able to get in. To compensate for only having 20/800 vision, the doctors believe that at a young age his eyes developed nystagmus (a condition where his eyes continually shake from side to side).
We have seen many specialists and surgeons over the last ten months and all are amazed at how well he gets around considering his impairment. We attribute that to the fact that he was largely left on his own at the orphanage to navigate life for himself. Without the love of a mother and father for the first six years, he developed amazing life skills to compensate for his lack of vision.
This ability to compensate has been so accurate that we forget he even has a vision impairment! Henry attends public school in a general education class and also receives weekly hour long instruction from a vision impairment specialist. She has taught him to use a magnifier to see his worksheets and books, he has a monocular to see the blackboard and has even started him reading braille. We have all been so amazed at how quickly he learns new things, it is evident he has unlimited potential.
Recently in the car with my other children, Henry said “Mama, what is your special need?” And you know what? He is right. I have seven children, all ranging in different abilities, and I have realized that we all as human beings have a special need. Some are very obvious, like opaque corneas, but others are invisible like low self esteem. Every one of us has our own special need.
If you are considering a child with the special need of vision impairment, here are some things to consider:
1. Our son is messy. It’s very difficult for him to see the fork to pick up food, so he places his mouth on the edge of the plate and scrapes the food into his mouth like a tractor moving dirt. He prefers to use his fingers over utensils because he can discern what the food is much easier if he can feel it. Food gets everywhere – we have even cleaned mashed potatoes out of his ears!
2. Don’t rearrange your furniture. Henry plays tag through the house with our typical sighted children. He has the layout of all our furniture memorized. I made the mistake of moving a floor lamp to a different location and it didn’t take ten minutes and he had already run into it and knocked it to the ground, the light bulb shattering everywhere. Another thing we have found is that cabinets and drawers need to be shut at all times. The other day someone left the silverware drawer open and he walked right into it, cutting his forehead.
3. He can’t read facial expressions or body language, so bonding and attachment need to be fostered more through touch. I try and hold him as much as possible and stand very close so he can smell/feel my closeness when I talk to him. It’s fascinating, but he still can’t smile for a picture. He simply can’t see what a smile looks like and therefore can’t copy it.
4. He touches everything! It is his way of exploring the world. The problem occurs when he thinks nothing of reaching his hand to the stove to touch what is cooking or putting a hot pepper up to his eye to get a close look.
5. He has extra sharp hearing. He can hear a lawn mower on another street and an airplane before I can see it in the sky. I believe his ability to focus on sounds has helped him learn English much faster than most children. He can also hear when you are trying to say something in secret, so we always have to watch our words!
6. He hasn’t realized yet that there are things he just won’t be able to do because of vision impairment. And we aren’t going to tell him. Every child deserves to dream… and for this little boy, if he wants to be a firefighter, a policeman, or a pilot, we are going to encourage him to reach for the stars.
We have plenty of time to figure out the steps along the journey.
To offer people a closer look into adopting a child with vision impairment and Down syndrome, we started a YouTube channel called A Real Life Fairy Tale/Audrey Shook, and blog, A Real Life Fairy Tale.
– guest post by Audrey
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