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Becoming a Crusader for Our Children

Featured image description is in the body of the post.

Nothing brings out the crusader in us like becoming a parent, especially when we have a child with special needs. Gracie Benedith-Cane is a remarkable mother and crusader for her visually impaired son. A few months ago I wrote the following introduction to “3 Blind Mice Are Stylish Mice With A Purpose,” an article featuring Gracies work.

Gracie and Wani image description is in the body of the post.
Gracie and Wani

One of the most pervasive and persistent misconceptions about blindness is the theory that we cannot appreciate beauty. What many people don’t understand about blindness is that it is not a matter of seeing vs not seeing. Blindness is a vast spectrum where the majority of people who are blind have some residual sight.

I’ve been following Gracie and her son Wani on Instagram for quite some time and what immediately caught my attention was her charming logo. The three blind mice who also happen to be the characters in Gracie’s children’s book “What’s Cool About Braille Code School?” are very stylish looking images. And of course, they look quite cool with their white canes. The book was “written to inspire, uplift and give confidence to children who are visually impaired as well as inform sighted children about braille and special needs awareness.”

If you’ve heard of Gracie, you may have seen her in the media as her work has been getting some national recognition. She’s been on local news, NBC’s Today Show, and Passage to Profit Radio Show, to name a few.

Getting To Know Gracie

As I said in my intro, though I’ve followed Gracie for quite a while, I’ve only recently spoken with her by phone. A request to feature her on Bold Blind Beauty ended up being a two-hour-long call. As a fellow parent and disability advocate, Gracie and I discovered we shared many commonalities. From the moment we greeted one another, we excitedly began talking about our work and exchanging ideas on how we might help one another.

Since Bold Blind Beauty’s Cane EnAbled series focuses in part, on parents of blind and visually impaired (B&VI children), Gracie agreed to answer some questions about her experience.

  1. Since the majority of the world is sighted many people are never exposed to or know of people who live with blindness/sight loss. Before your son was diagnosed what was your level of understanding about how blind people live their lives?
    • I did not have any understanding about the lives of blind or even visually impaired people… I only understood the experience with watching tv shows like Little House on the Prairie when the character Mary went blind. That was my first experience in seeing how someone reads Braille as well. 
  2. Gracie, you are an incredibly fierce and passionate mom whose love for her children is undeniable. It must have been heartbreaking when you learned of Wani’s diagnosis. Can you tell us what led to his diagnosis and how it made you feel? 
    • Well, when Wani was 2 months I saw that he had rapid movements in his eyes so I went to his pediatrician who then recommended me to go to an ophthalmologist. He examined Wani and told me Wani was not going to have 100% of his vision. At 11 months he had his 1st MRI and the findings were that Wani had Septo-Optic Nerve Dysplasia. I was DEVASTATED and the devastation lasted for almost 2 years! I felt lost, alone and confused as to what and why this all happened. 
  3. With Wani being your firstborn everything was new to you. After you received his diagnosis how did you manage his care? Were there service providers readily available to assist you to meet Wani’s needs and help him meet critical milestones?
    • His pediatrician, the wonderful Dr. Liza Natale gave me information about services and specialist for Wani. I got ALL the services meaning ophthalmologist, endocrinologist, and 5 therapists to come into my home 5 days a week to give him the therapy that he needed in his very young age. 
  4. From the moment we learn we are about to bring a baby into the world we have expectations of having a ‘perfectly’ healthy child. As a parent of multiple children with and without disabilities is there a difference in how you feel and/or interact with your children? 
    • There is no difference on how I feel or interact with them. I give them all that they need when they need it. Giving them hugs, guidance, attention and most importantly LOVE! With Wani, I have to do things slightly different for better understanding and safety as to what he does not see and my 2nd child, my daughter Niara understands fully and even assists her brother in so many ways. Their relationship is So Special to see. My youngest son, 2 yr. old Zaire was just diagnosed moderately autistic and I have services and therapist in my home again. My Life!!
  5. How did Wani’s sight loss influence you come up with the idea of your book “What’s Cool About Braille Code School?” 
    • I was at an office called Invent Help to see about a patent for my product and the man whom I went to see kept looking at my 3 blind mice logo and told me that I should do something with them. It created ideas on how to use them. I saw how sighted children reacted to Wani everywhere we went. Wani did not have sighted friends. So I decided to write the book to give sighted kids a better understanding as to what the life of a blind child is like; to create a conversation and interaction between them. 
  6. What advice would you give to new parents who’ve received a diagnosis that their baby has a disability? 
    • I would tell them that I can relate with their experience and that although they may feel whatever they are feeling they MUST be PROACTIVE! It is VITAL to be proactive, do the research on the diagnosis and seek all the services that their child needs.  MOST of all I would tell them they are special people to have had a special needs child SO it is also vital to PRAY for guidance, LOVE and LEARN your child. By doing all of this I would promise them that all will be fine and that their child will begin to show them that all will be fine!
  7. Would you like to share additional thoughts on blindness/sight loss or how we as a society can improve how we view disabilities in general? 
    • I would like to share that no one should assume that when they see someone with a white cane or a wheelchair they should automatically feel so sorry for the person or assume they are not ABLE. Give them a moment/chance to show you their capabilities!! Also, society is so far behind on giving the blind and VI more access to supermarkets, clothing and toy stores! Braille should be EVERYWHERE not only on bathrooms, exits, and elevators… they want to be able to shop and do all the things sighted people can do. 

Summary

There is no one-size-fits-all approach to raising a child with special needs and every family situation is different. However as a parent of a child with special needs, its an instinct to learn all you can about their diagnosis to help them learn to live a fulfilling and independent life. Like Gracie said in her comment, she was at first devastated to learn of Wanis sight impairment then after a period of time, she discovered his particular needs and how best to help him to achieve his goals.

Connecting With Gracie:

Image Descriptions:

  • Featured Image: A photo of Wani and his two siblings. L to R Niara, two-year-old Zaire and Wani are standing outside holding hands. Wani is holding his white cane in his left hand.
  • Gracie is standing hugging Wani while they pose for the camera.
  • A gallery of three images of the blind mice: 1) the logo is an illustration of three blind mice each of whom is holding a white cane 2) cover of the book “What’s Cool About Braille Code School” contains the illustration of three blind mice who are standing in front of a school building in red and white coordinating school uniforms 3) the back of the book with a summary of the books content.
  • The second gallery of three photos: 1) Wani is standing with his white cane 2) a photo of sneakers with the right/left braille patches on the tongues 3) a clear package of the left/right patches.

2 thoughts on “Becoming a Crusader for Our Children

  1. Love to hear about parents like this!

    1. Isn’t she fabulous? It’s so encouraging to hear about people who find positive ways to make bring about change.

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