After a full day of presentations on a wide variety of topics and fun activities, parents of young children with vision loss came together in the school auditorium. Before they left, I asked them to share something they were going to take away from this experience by writing it on a post it note and placing it on a whiteboard near the stage. Some folks wrote a single word. Some wrote more. Each sentiment is the beginning of a story only they can write. A story with an ending they can control.
Maybe, a story they can share when they speak at the Perkins 50th annual Early Connections Conference. Or 75th…. who knows?
Here are the words of the parents.
Hope
I hope every parent can be brave to fight their children
The kid with special needs was born to show us WE ARE STRONGER THAN WE THOUGHT
Support each other
I want to bring this amazing inspiration to my home, family, work, city, and country – all countries!
Stay strong.
We are all on a journey looking for answers and connections. #FeedtheHope
If a 3-year-old understands this, then I need to up my game. #FeedtheHope
Be motivated by love, not fear.
Community
It’s okay to be sad. It is okay to cry. I got your back.
Inspiration
Be an involved dad!
Feed the good wolf
Be positive. Life is good.
Medical imaging will not define what my child can do.
Don’t stop dreaming.
You’re a great Mom! Congratulations Perkins
A future together
I’m not alone anymore
Inspired and thankful
Every parent has a story.
SO MUCH INFORMATION! (I learned a lot.)
Expect miracles
Belief statement about your child
Knowledge
Advocate
Unconditional love
Balance is important. Remember to stay connected.
Treasure the special moments
Rainbows always come after the rain
Every family has their own story about their amazing kids!
JOY! To find it whatever situation – family, friends, church, work, community
Perspective
Faith in action!
Every day my life is inspired and strengthened by moments of joy.
It will get better.
There is a nice way to ask for commitment to follow IDEA.
Doctors needs sensitivity training. Listen to your gut.
It’s OK.
Just keep swimming but know where you are swimming to!
Keep going!
Family connection is essential.
Be your child’s advocate. The experts don’t always know what’s best.
Families are powerful, knowledgeable, and resilient.
You are not alone. You are an amazing parent. Don’t ever think otherwise.
I will choose how the story ends.
Teamwork
Faith
Never feel alone again.
Image: An illustration of the words “We’ve Got This” held up by a group of women. A baby sits on top of the words holding a rattle in the air. Illustration doodled by Ian Christy (https://www.instagram.com/i.christy/)
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Image: Ron Benham , Danielle Bangs on the left. Teri Turgeon standing on the right of a whiteboard. On the whiteboard is written “Happy 35th Perkins School!” The whiteboard is covered in colorful post it notes.
At the end of the conference, Perkins recognized the achievements of Ron Benham, who is retiring from his position as Bureau Director at the Massachusetts Department of Public Health. Ron was one of the people in Massachusetts who understood the importance of early intervention and helped to build (and find funding) for the service system over 30 years ago. Families of children with special needs benefit today from the decades of work of dedicated professionals like Ron Benham.
Bravo Ron! Bravo Teri and Ed and Danielle and everyone at Perkins! Bravo fellow families! We are in this together!
CVI Momifesto 
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