Skip to main content

Risky Business

Two weeks ago, I read a website about a little baby who has severe facial abnormalities that are fairly uncommon. The parents, who seem to be amazing advocates, were able to introduce their child to the town with an article in the local paper about her disability. The parents hoped to make introductions simple – they said, we’d love for you to come and talk with us, but we welcome a wave hello too. They were positive and open, and they gave easy instructions for friendly neighbors on what to do if they were seen out and about town.


Most people do not know how to react, what to say, where to look. So rather than be uncomfortable, they just ignore the whole situation, which comes off as being rude and ignorant. Or if they do take the risk and talk to the family, they may ask a question that may not be taken well by the parents.


When I was in college, I roomed with someone from St. Croix. My first comment to her parents was, “So your daughter is an international student.” Her wonderful parents did not laugh at my ignorance, just informed me that St. Croix is part of the US Virgin Islands. My question was handled so well by them. They did not make me feel stupid or dumb. Cheru came to be one of my dearest friends, and she allowed me to ask all types of crazy questions about her hometown and being Black.


My friendship with Cheru helped me to form relationships later with people very different from me. It also laid the groundwork for me to be accepting of people who ask questions about Ben when we are in public. I am able to answer their questions, trusting that their curiosity comes from a caring place.


Not only do we as the parents take risks, but those who care enough to open their hearts to a new experience take a risk too.

Comments

Popular posts from this blog

Catching up with Ben

  I wish I had more time to write on eSpeciallyBen . Ben teaches us lessons on a regular basis: Smile often, give hugs, sit down and savor the moment, grab someone's hand to let them know you care and laugh with abandon–even if it annoys your brother. Ben will be 18 this summer. He attends high school in-person and enjoys seeing his classmates and teachers each day. In the photo above, it's 6 a.m. and he's can't wait to get on the bus. As for most people, the pandemic has been tough. Ben's in-person activities, camps and programs were canceled. He's happy to see grandma when we met on a Charlotte greenway or park. Ben seeks out social interactions and being quarantined away from friends and family was even more difficult because he didn't understand why. Ben's teacher sends me photos of him throughout the week. They just finished a rousing game of catch here.  Thank you for following eSpeciallyBen. If you want to see what I'm working on now, find me

A Lesson on Supplemental Security Income

In October, I received a letter from Social Security Administration saying that Ben no longer qualified for SSI AND we owed a very large over payment for two years of SSI that Ben did receive. The letter showed that we owned two of the same car. I knew this was wrong and immediately wrote a letter. I thought it was a computer glitch. Over the past five months, I have met with Social Security, spoke with several people over the phone and wrote countless letters providing documentation to show the cars we actually owned and filed appeals for the decision to revoke Ben's SSI during the two year period they think we owned these two cars. Tomorrow I have another meeting. I am hoping we can get this straightened out. This situation has caused a lot of stress for us and has taken a tremendous amount of our time trying to unravel the problem. I have not written a post in almost a month, partially because my brain power has been consumed with this issue and the bathroom saga (qualifies

Parenting an Adult Child with Disabilities: Talking About the Future

Ben in the middle with Dad (left), Carla Payne with Aging Care Matters and Mom This is the first of several posts about parenting an adult child with a disability. Ben will be 19 this summer; I am learning along the way. As always, I hope to pass on resources and wisdom. Discuss the future.  If your adult child is able to participate in planning for their future, ask them how they envision it. Let them draw a picture. Ask them to tell you a story. Maybe they can sign a few words that mean a lot to them. Find a way to get them involved. How do they see themselves living? By themselves, in a group home, with another family or with a sibling? Where do they want to live? In another city, in an apartment, in a house? How far away do they want to live from family? What level of independence can they handle? Do they want someone to check in on them? Do they want to find a job? Do they need a job coach or supportive employment? Who will help them with their finances? Is there someone they tru