Does that mean I get a cane now?
And a dog?
That would be sooooo cool!
She was excited, my precious one. She skipped and danced, as we left the hospital. I had just explained to her, in careful wording, that she was now officially ‘disabled’. At the last tests, her eyesight was down to ten percent, which was substantially less than a bystander would judge. Most people don’t even notice she is 90 % blind.
She compensates a lot, the therapist confirmed. She constantly moves her head around to get a full view with the remaining ten percent. Her eye-brain-connection is still flexible and easily adjusts. She even unconsciously practices echo localisation. The scientist in me finds thàt extremely cool.
The overwhelmed mother, on the other hand, was nearly in tears. I had known what was coming. I had heard the forecast. I had seen the clouds. But still, the thunder unsettled me.
Disabled. The phrasing seems so inappropriate for her. She is so able!
She is in first grade now and struggles to learn how to read. Focusing on the letters is extremely tiring for her. She keeps losing track of the word she is reading, as it disappears in the 90 % cloudy view. She literally has to press her nose next to the word she is deciphering. Writing is even harder, with minimal sight to guide her hand.
But still, she keeps trying. For the last month, she has worked twice as hard as her classmates. She has begged for extra homework and practised until her neck was hurting too much from bending down. For now, she just craved to learn how to read.
So that’s what she did. Last Thursday, she passed her first reading test. Yes, she was far slower than her peers. But she passed. I’ve never been prouder.
As of today, with her official label of disabled, she is entitled to extra support, both at home and in school. We’ll get her a special, tilted desk to spare her neck. Binoculars to keep track of the writing on the board and other magnification aids. Learning will become easier for her from now on.
And no, she won’t get a cane and a dog just yet.
She wasn’t even disappointed and kept skipping, not noticing all the people who had to jump aside to let her pass.
I don’t need them anyway!
Instead, she asked for eye make-up.
You know, because the doctor said I have such lovely eyes.
She chose yellow, which turned golden on her skin.
Sunny clouded eyes.
How do you talk with your child about disabilities? Do you recognize the lightness of heart a child can deal with it?
This is an original post to World Moms Blog by K10K @ The Penguin and The Panther.
The picture in this post is credited to the author.
My cousin’s daughter is in a similar situation (although she was adopted from China and I don’t think it was 10%, but it was low as well). She is now 16 and in high school and is in the top of her class. She too gets extra help with reading her tests and additional time to take them since her eyes are so weak. Like your little girl, she struggled at first, but things got much better once she was properly diagnosed. One amazing outlet for her has been judo, where she competes in the junior Olympics – and wins! If you would like to chat with my cousin – PM me on FB and will put you two in touch. Be strong – your daughter has the right attitude of being positive and looking forward. Now she has a reason for all of her struggles and hard work. Now you know and knowing is half the battle. xx
Thank you so much, Mama Aya! My daughter loves sports too! She can still see enough to do athletics, and she’s the fastest 6yo on the track!
We are still waiting on a diagnosis, and it is hard. All the tests, all the uncertainty… I agree that knowing will help A LOT!
Have you read Jean Little’s book, “Little By Little”? It’s about growing up legally blind. She ended up becoming a prolific writer if children’s books, many of which feature a child with a physical difficulty – one called “From Anna” features a little eight year old girl whose family don’t know that she can’t see well.
Anyway “Little By Little” is her autobiography and it is touching and important. Your daughter is too young for it yet but you might find it interesting and you could read it to her when she’s a little older.
“from Anna”, the fiction book (which takes place in Germany/Canada before World War II) might be good when she is in grade three or four.
I haven’t read this book, but I’m going to find it! Thanks!
We do have a book about a girl that is blind, and she is named Anna too. It focuses on the things Anna can do better than her peers (like finding things in the dark when there was no electricity). My daughter loves that!
I am moved by your story and so admire your daughter’s strength and abilities despite obstacles. May we all be so strong and resilient. I wish you lots of strong days ahead as things shift and change. XO!
I too admire her strength and resilience! She’s my greatest example 😉
The post brought tears, then the comments had them pour …
This community is one of such love and support…. blessed to be a part of it xxxx
HUGE love to you, and your happy girl xxxx
Didn’t mean to make anyone cry!
But indeed, this community is the best!