When my youngest child was born, we were told he couldn’t even see light. Was there any hope that this would change?
A kind surgeon looked us in the eyes and said, “He may see 10 percent, but probably nothing” he said. Oof. This was hard news.
Zion, our bald-headed, chubby, snuggly bundle of hopes and dreams had no pupils, no lenses, glaucoma in both eyes, and at 9 weeks old, one retina detached indefinitely.
I would recount to my husband after every visit with him in the NICU “He’s perfect. Is there anything more perfect!” Yet, I wept over this baby night after night. I was overwhelmingly thankful to have him to love, but grieving the loss of his vision.
When I read to my older children I cried at the thought that Zion may never look at a book with me. Would he ever see my face? The love in my eyes for him? My smile?
Will he really never look wide-eyed with wonder at a worm or a butterfly like his siblings?
The first year of Zion’s life was challenging. There were many appointments, doctors and questions—and oh-so-many losses. But the story doesn't end there.
After almost ten surgeries before he was eight months old, we finally saw signs of vision.
His development and hitting milestones has been slow, which is to be expected. It is difficult to say what he can see now, but I’ve learned that in some ways, what he can see doesn't really matter as much as I had thought.
In the early days, I wondered "how do you make the best type of childhood for your child when he can't see the world around him—and can't even see you?" As he left infancy behind, the answer became simple: We play.
It’s so important to play with your kids. Here's the thing; play has the unique power to cross barriers of culture, age, language, ability, comprehension and so much more. Play connects us emotionally, strengthens our bond with one another, and gives us fond memories and experiences.
Through play, we learn from one another. We learn about each other's passions, joys, limits, strengths, hopes, dreams, and fears. When we play we can test ideas, process trauma and learn.
But most important of all, play allows our children to thrive just as they are. Play is not only fun, it is imperative to building resilience.
Playing with Zion has challenged me to face my son's losses and move forward with hope. Because childhood visual impairment can delay physical and cognitive development, figuring out how to play with Zion was challenging, but we persevered and learned together.
Children want nothing more from us than the safety that connection offers them. A deep sense that we know them and are there for them calms us both, bonds us to our children and gives them the confidence they need to gain independence.
Especially important for children with low vision, feeling secure in an uncertain world is the bedrock of their learning. Make connection a priority with toddlers by giving them lots of physical affection and making them laugh as much as you can. Empathize with hard feelings, too.
It is helpful to narrate your actions as much as possible. This helps enrich your child’s vocabulary and keeps surprises at bay and is beneficial for all babies and toddlers.
When Zion was born, I remember being so careful with him as if he would break. Toddlers with visual impairments love to roughhouse. And they need it. They need to be flown around like airplanes and love to chase siblings and parents roaring like a bear.
Roughhousing helps kids release energy and emotions and teaches them about boundaries and consent.
Having one of your senses impaired heightens the others. We have the most fun playing with sound in our home. You may find your child likes to throw things to hear their percussion and also measure spatial depth. Make it a game to play with the sound of everything.
Throw pot lids, drum the hardwood, and tap utensils on various containers. Plug in a keyboard or give them a basket of instruments. Sing to them as much as you can and read them many nursery rhymes.
"Play is the mediator of the invisible and the visible," said therapist Dora M. Kalff who developed sand play therapy. Offer your child many opportunities to play with foods, smells, and textures of all kinds.
One of the best ways you can do this is by taking them with you to experience the world. There are new smells and textures everywhere we go, the farm, the grocery store, and the park. You can make up sensory bins for home play, too.
Follow their lead, and believe in them. Believe not only in your child's inherent motivation to learn— but in their ability to overcome many of the things we see as obstacles to their growth and happiness.
Allow your child to redefine what you think you know—about everything—especially about play and experiencing the world.
Cultivate a culture of celebration in your home. Let your child’s life be a story that declares “look what I can do!” instead of keeping a tally of what they can't do. Tell them you love them, that you're grateful for them and show interest in the activities they love.
As Theodore Roosevelt said, "Comparison is the thief of joy." Don't bother comparing your kids to each other. All kids are different, no matter their needs. Take your child into your lap and appreciate all that they are in this moment.
In times of heartache, look for the good in your life. Appreciate the things that bring you joy—including your child.
No matter your child's needs, with your love, acceptance and encouragement, they will experience the world around them with passion and focus using all of their senses.
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