Skip to main content

May Edition eSpecially Parents: Elisa's Story

Samson’s Winning Run

Of course it was raining, not too hard, but the black sky sailed in fast. So many treasured moments unfold under rain. Today the rain fell on my son running the 100 meter race at the Special Olympics. What he actually did was not exactly running – more like walking at a moderate pace, just slow enough to smile at all the people cheering him from the side of the track. Most of the people cheering I didn’t know, but he gets around and he gets known.

Samson really has absolutely no competitive spirit. None. He doesn’t care what sport it is, what kind of ball he is supposed to be throwing. For him, it’s only about the sheer thrill of the instant when everybody’s eyes are on him. Those are his winning moments. When he was younger, on Wednesday afternoons, I would take him to ride horses at a farm for hippotherapy. When the sweet horse would quicken into a gentle trot, Samson would let go of the reigns, his arms waving in the wind. The trainer would stop, of course, but he had his moment.
And that’s what it’s really about for him. Living in some second that is all his. I love that about him. He finds his own victories on his own terms. And I smile from the deepest part of my heart.



eSpecially Parents is a monthly series featuring nine moms with amazing stories to tell. To catch-up, read more here.

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