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The involuntary eye movement that we noticed with Ollie is called nystagmus and is typical of this disorder, further affecting the vision. (Some call it poetically dancing eyes.) The precise impact on eyesight, though, is complex to define; it varies greatly among people even when they have similar melatonin levels.

Curiously, one of the first things our diagnostician chose to tell us to explain albinism was your son wont be able to drive. I looked at my fairy-fair baby, struggling to imagine him holding a steering wheel, struggling to keep the contents of my stomach to myself

More recently, Ive actually met several people with albinism who drive. But at the time, shell-shocked and unable to extract any hopeful information from our doctor who also told us categorically that glasses dont help I merely retreated home to grieve.

For the following few months, I woke up every morning with a lump in my throat. I carried my tiny son around strapped to my chest with my own vision blurry from tears and lack of sleep, envisioning his devastating future.

My baby trapped in the darkness, bored and lonely; my future toddler stumbling around the house and falling, and falling. I had no idea what to expect.

The internet offered a mostly vague, or contradictory, information. I read that its normal for babies with albinism to see very little, but later theyll be able to see more. How much more? How much later?

Then something changed. The change was called Beth. A white-haired ball of energy, a Vision Australia worker with no medical training but zillions of years of experience, she walked into our house and sat down on the carpet near Ollie.

Beth smiled at him even if he couldnt see it, and sang to him until he smiled. Then she looked up into my wet eyes and said, Hell be fine. Just like that.

Not worried about formal protocols or giving false hopes. Hell be fine

Soon after, Beth arranged for us to meet our future some older children with albinism. None of them stumbled in the dark, although some needed walking sticks, and many rode bikes.

On Beths advice, we also joined the Albinism Fellowship of Australia and attended their conference, where we also met our more distant future adults with albinism who were scientists, musicians, teachers, doctors.

The more people I met, the more I watched my baby who was now crawling all around the house (not stumbling), the looser the lump in my throat became. We bought Ollie his first glasses orange ones, with teddy bears when he was two. They do help him see. (They also help him fancy himself as Harry Potter.)

Four years since that diagnosis, and I now know my greatest fears related to the physical side of Ollies disability havent materialised. He cant see the pictures shown during storytime in his kinder, nor can he see much in the theatre even if we sit close to the stage, and he loses us easily in public places.

Mia Freedman speaks to Vanessa Cranfield on No Filter, about what its like parenting a child with a disability. Post continues below.

But then, most mornings he wakes up with a huge smile, terribly pleased with this complex world.

He rides his scooter with gusto and doesnt shy around playground climbing equipment, even if it presents him with more challenges than the other kids. He began reading and writing before he was four, which is also when he performed his first piano concert. He makes friends easily.

Continue reading here:
'He will never be able to drive.' What it's really like parenting a child with albinism. - Mamamia

This entry was posted on October 25, 2019 at 3:44 am and is filed under Eye Sight & Vision. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed. |