Ashton was born September 22nd, 2011, he had so much hair and weighed almost nine pounds. He was full term and looked like the most perfect baby boy to me and his dad. We had no idea he was blind or of any of the medical needs he would have.

After he was born he had to be taken to the NICU for having extremely low blood sugar. He was hypoglycemic and I didn’t know this was an early sign of his condition. He spent a week in the NICU because he struggled with nursing and needed a feeding tube to help him. It was the longest week waiting to take our son home. Finally he gained enough weight to be able to leave the NICU.

Bringing Ashton home felt like the end of the hospital visits and specialists but it really was only the beginning. I noticed his eyes would bounce up and down when he opened them. It was like he couldn’t control his eyes to focus and track a toy. I brought up my concerns with his pediatrician but he said Ashton was fine and he would start tracking toys at 2 months old. I knew there was something wrong with my baby but no one seemed to validate my concerns.

At 2 months old, a nurse came to our house to do a follow up from the NICU and she noticed that my son did not turn his head at all towards the sounds of my daughter’s voice. He reacted reacted to the sounds but he didn’t turn his head to look at her. She wrote a referral for me to take to my pediatrician and that’s when he started validating my concerns and referred me to a pediatric ophthalmologist.

When we first met with the pediatric ophthalmologist I was a mess. I knew she would tell us my son was blind but I still wanted to have hope to be wrong. She showed Ashton some lights and then had him look at some black and white pictures. She said she was concerned because he wasn’t tracking at all but she wanted to get an MRI done in order to see his Optic nerve. She told us she didn’t know his diagnosis yet but she would be scheduling the MRI test and it would give her a better idea of what his diagnosis was.

Having my two month old baby get an MRI done was heartbreaking. I cried as I signed all the papers and watched him get wheeled off being so tiny laying in the big hospital bed that would go into the MRI machine. After a few weeks, the doctor called me with the results of his MRI. She told me to sit down and if I had anyone else home with me that I could talk to after we were done with the call. I sat on a rocking chair holding my son and listened to what she had to say. She explained to me that Ashton had Optic nerve hypoplasia a condition where the Optic nerve did not develop fully during pregnancy. She then went into detail about the Optic nerve and other parts of the brain this affected, but I couldn’t focus on what she was saying, all I could do was cry and look at my baby boy I was holding in my arms. She told me my son was blind and my entire world fell apart as I heard his diagnosis for the first time.

I knew nothing about the blind, braille or any of the things my son would need to learn about. Our local school of the Blind sent an amazing TVI (teacher of the visually impaired) into our home to teach me everything I needed to learn about it. Our local early intervention program also came into our home to work with my son with physical therapy and reach milestones. His developmental specialists and TVIs became a resource to help me guide my son to reach milestones.

When Ash was 5 months old he started Early Head Start and he loved being around other children in a classroom. He reached most of his milestones in these classrooms, I had just got my bachelors degree and worked there as teacher and loved having him so close growing and learning. He learned how to hold his head up at 6 months, crawl at 12 months and he walked at 18 months. All of these milestones where so special to witness because I always worried about how he would learn to do these things without vision.

As he got older, Ashton taught me that not having vision was not something that would ever keep him from reaching his goals. He was a determined little boy and he wasn’t going to let anything stop him. He went to a special ed and a mainstream preschool classroom and learned both Braille and large print. In his preschool years I learned that my son had a little bit of vision and he was very good at using it. He learned how to ride a balance bike and paint and color just like the rest of his peers in his class. He also played in a playground with his white cane and learned how to run after his friends. He loved being around other children and they loved having him in their class.

When Ashton started Kindergarten I made the choice to send him to a mainstream Kindergarten classroom because I had seen how much this helped him in preschool. Our district had never sent a blind student into a mainstream classroom so it was a battle I had to fight at his IEP meeting. But they agreed to let him be placed in full day Kindergarten class. In this class he thrived and he learned how to Braille sentences and read and write in Braille and large print. His teacher was incredible and willing to work with all of his therapists too. Ashton had a Braille teacher with him for most of the day to help him in the classroom and he also got orientation and mobility, occupational therapy and resource help all at his elementary school.

We love his elementary school and all the teachers he’s had there. His IEP team has truly helped him learn so many things I never knew he would be able to do. He is now in third grade and even though we have been doing school from home during the pandemic, all of his teachers are amazing resources for us. Ashton has many best friends in school too and he misses them so much. I’m so glad I’ve had so much braille help from his teachers because I’m able to help my son at home.

Ashton just turned 9 years old and I can’t help but think of how wrong I was to ever think his diagnosis would hold him back from living the most beautiful life. Ashton has learned how to ski being blind, he has learned how to ride a bike without training wheels, he has performed in front of hundreds of people singing for non profit galas and he’s also done so many auditions for acting parts in movies. My son is incredible and there’s nothing that he can’t do. He might have to do things a different way than other kids but he always finds a way to do them. He’s just as independent as any other 9 year old. I wish others knew that children who are blind are capable of doing so many things. I love when children come up to Ashton and ask him about his white cane instead of looking at him weird and walking a different direction. Parents need to teach their children that children who are blind can be amazing friends and not be afraid to let their kids talk to them or ask questions. Ashton is not ashamed of being blind or afraid to tell other about it. He loves sharing about himself and he loves making new friends. He sees others with his heart before he sees them with his eyes and that is something that I think we can all learn from him.

To learn more about Ashton, follow along @ourblindside on Instagram!

Connect

Explore