Tag: TVI

I began following Mac’s story on Instagram when I came across a video of him using his first cane. Watching Mac use his AMD (alternative mobility device) was so cool as I’d never seen one before. My heart was nearly bursting as I witnessed this little guy claim his independence. So I asked Nicole (his mom) if she’d share his story with us and she said yes!

Mac’s Story A New Perspective On Life

When my son was 5 weeks old we found out he was blind. At that point, I was overwhelmed with emotion; angry, lost, and in denial. I had no idea of what this meant for our sweet son, Mac, or our family.

There are so many emotions I felt no one could have prepared me for:

• I felt heartache when I saw other babies looking into their mama’s eyes;
• feeling of failure as a parent when Mac couldn’t hold his head up or crawl;
• comments of pity from others when learning about Mac’s diagnosis and blindness.

I was now a special needs mom. This meant I had to learn how to avoid letting these heartaches and struggles lead me down the wrong path. I needed to do something to prepare myself to handle this emotional rollercoaster and new life that we had begun.

Very quickly, we connected with our local early intervention program for the visually impaired. Before we knew it, Mac had a teacher of the visually impaired (TVI) and occupational therapist (OT). These professionals taught us how to aid Mac in his development.

The more we connected with others, I quickly learned of the huge financial deficit for the visually impaired child. I felt compelled to do something to remedy this situation and bring it to light. So I began posting stories about Mac, and what we are learning about how to supplement a visually impaired child’s development. This was an important piece because 85% of all development is incidentally done through vision. Teaching Mac how to meet his developmental milestones without being able to see wasn’t intuitive to us. We are so thankful his TVI and OT are there to guide us.

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The Healing Power of Sharing

I never could have imagined how therapeutic it would be to share Mac’s story. The outpouring of support from friends and strangers was so heartwarming. People began to ask for more updates and have specific requests for the next post. They wanted to learn how Mac navigates a new environment or if he seems to have refined his other senses. It was so nice to go from feeling alone and helpless, to feeling supported. Educating others about visual impairments and building inclusiveness was an added benefit. Amazingly, talking about the issue seemed to remove the avoidance and pity from others.

As Mac continues to grow, he is learning so much. I had no idea how much intervention is required for our son who is blind. In addition to his TVI and OT, he has an orientation and mobility specialist (O&M) and soon a speech-language pathologist. It’s amazing how much we incidentally learn through vision; even speaking is something that is primarily learned through watching others. We are so thankful for Mac’s team of specialists. This team has helped us learn to embrace this new life and prepare our son to achieve great things.

We have gained the same passion that so many others who are visually impaired have, to change the stigma, fight for the cause, and make a difference. We find ourselves advocating for early intervention and inclusiveness.

Paying It Forward

While we cannot cure Mac’s blindness or give him sight, we can teach the world more about blindness. In addition, we can help make the world more accessible for all people. We’ve started an annual fundraiser, a gala that benefits the local early intervention program that has been so good for our souls. We feel like we are making a difference in the lives of other children with visual impairments by removing some of the financial barriers to accessing the care they need.

Mac has taught us so much in his less than 2 years of life. There is so much more to life than what you can see. You are not defined by your disabilities; they are a characteristic of the amazing person that you are. The uniqueness each of us possesses is what makes this world wonderful. If we learn from one another, our perspective will continuously flourish. While there are numerous challenges, I am so thankful for Mac’s blindness and our new perspective on life.

Mac’s Story A New Perspective On Life Featured Image Description:

Closeup of Mac shows the light blonde haired cutie smiling while he holds onto his blue and white AMD. He is sporting a chunky gray cardigan over a flannel shirt with blue jeans.

Additional Images:

1. Mac’s family; mom, dad, Mac and his two sisters are standing outdoors in a grassy field posing for the camera. Mom and dad are holding one another and Mac’s sisters are standing in front while mom holds Mac in her left arm. In the background, golden orange autumn foliage can be seen.
2. Is a tri-panel collage: The first image is in the same grassy field as photo 1. In this image, Nicole is holding Mac in her left arm while her two daughters are each holding one of her legs. Mac is using his AMD on the sidewalk it almost looks like he’s running. In the third photo, Mac’s oldest sister is holding his arms in the air while he walks in the grassy field.
3. On a clear, sunny autumn afternoon bundled in a blue winter jacket, Mac looks like he’s having a blast on a toddler swing.
4. A stunning black and white photo of Nicole holding Mac on her lap while he is smiling broadly.

Following Mac’s Story:

• Instagram: mac.bold.brave.blind
• Website: www.illuminate-kansascity.com