Guest Blogger -Carter's Story

Carter

Meet Carter. A former 25 week micropremie, he is currently busy being an adorable three year old with Retinopathy of Prematurity (ROP.) His mother Julie was kind enough to answer my call for guest posters. Enjoy his inspiring story.

Tell us a little bit about your family and your child:

My name is Julie Scott and I am the mother to two amazing boys, Carter (3 years), and Grayson (10 months old).  My husband Rusty and I live in Forest, Ontario, Canada.   I work part-time at our local hospital and Rusty is an HVAC mechanic.  We also have a very lovable chocolate lab named Kasey.

Our oldest son Carter was excited to come into this world and was born premature at 25 weeks, 3 days on April 8, 2009.   He weighed 1 lb, 8 oz and was 12 inches long.  He spent 114 days in the Neonatal Intensive Care Unit.  As a result of his prematurity Carter developed Retinopathy of Prematurity in both his eyes.  After several surgeries in Canada and the United States Carter was left with very limited vision. 

Tough guy!

Name your child's five favorite things:

-       - Eating (the only thing he doesn’t like is bananas)

-       - Music

-       - Jumping on his trampoline

-       - Swimming

-       - Swinging

What has therapy (Early Intervention, school, or private) been like for your child?

Carter was a fighter from the beginning and continues to surprise us everyday.  He makes his milestones but just a little slower and at his own pace.  He has a team of amazing therapists (physical, occupational speech, vision, orientation and mobility and resource teachers) who have worked with him since he came home from the hospital and who have supported both him and us to help him reach his fullest potential. 

Any new milestones you want to brag about? (Big or small, they all count.)

Carter has a very loving but stubborn personality.  He just mastered the art of walking last year and we are now working on speech and language.  He has been able to fill in the words to familiar songs for months. Just this week as he was eating a snack and he sang the entire alphabet song by himself.  We are hearing new words on a daily basis and we couldn’t be happier or more excited to hear what he has to say. 

What is your favorite local resource:

It is not a local resource but my favorite resource is talking to other parents of visually impaired children.  You learn a lot from people in the same or similar situation to your own.  We are learning something new along with Carter on a daily basis. 

What is your favorite web resource:

www.ropard.org

We live in Canada but see Dr. Trese and Dr. Ference in Michigan.  It is very costly but has been worth every penny as both doctors specialize in ROP and there is no one in Canada that can compare to their expertise.

  

What do you wish people understood about your child?

It is very frustrating when other people take pity on Carter and our family.  He is a perfect little boy in everyway possible - he just needs to learn things differently than an “average” child. Carter is not any less of a person because he doesn’t have “perfect” vision.

Can you think of one thing that really improved your life that you want to share with other parents? (For example: I wish we would have started melatonin much earlier! Tom never slept before, and with Melatonin, he does.)

It was one of the hardest things we have ever had to do but one of the best things we did for Carter was sending him to daycare.  We had some rough days but he has grown leaps and bounds from interacting with kids his own age.  

He attends three days a week and has a support facilitator with him four hours a day.  She is able to help adjust his learning environment so that he receives the same curriculum as the other children just in a way that he can understand it best. 

What advice would you give to new parents of blind children?

Love them and remind them everyday how important they are to you and this world and even though they don’t have vision they can do anything they want … but just in a different way.  You are their best advocate and don’t treat them any differently because of their vision loss. 

Anything else you want to say?

When we first learned about Carter’s vision loss we were understandably devastated, but as time moves on we have realized that Carter is still our amazing little boy who can do whatever he wants in life.  He was given to us for a reason and has already taught us so many life lessons.  We look forward to see what the future holds for our amazing little boy. 

So much of Carter's story sounds like my Tommy. They are both working hard on their verbal skills right now and it's a very exciting time. I am blown away at how far this guy has come in three years. Carter is obviously one tough dude who has been lucky enough to have an amazing set of parents. 

Thank you for sharing your story with us!  

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