These stories describe our journey with Ben, our oldest son. Ben is a sweet and energetic redhead, born with a rare genetic mutation.
My husband, Ryan, and I try to keep up with Ben and his two younger brothers. I intend to shed insight into raising a child with disabilities and pass on the wisdom we’ve earned over the past two decades.
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We chuckled when we referred to the two Bens as BO & BM,
their initials forming unfortunate shorthand for human functions not talked
about in polite company. They were in preschool together, neither very mobile
and left on their own much of the time. Ben's mom, Donna, and I bonded over the
mistreatment of our sons, both of us ultimately taking them out of the poor
situation. Donna was going through a divorce at the time and had a lot of
stress on her. She was a single mom trying to help her Ben.
Donna's Ben had a smile that stayed with me. His eyes were part
of that smile and any interaction I had with him, even at that small age of
three, I knew that he was listening and welcomed my attention.
After leaving the original preschool, I lost touch with Donna. A
few years later, we all ran into each other at a children's library and stayed
in touch from then on. Donna wrote a few posts for eSpeciallyBen, and then I
did not hear from her for a few months.
At that same children's library, where we had reconnected, I saw
a mutual friend. She shared with me that Donna had died suddenly. She didn't know
the details, but it may have been breast cancer that came out of remission. I
was devastated. What would happen to Ben? How would he understand that his mom
would not be around? The questions hurt.
Donna's parents stepped in and took over full care of Ben. We saw
him often at summer camp and other random outings. His caregiver, who helped
the grandparents, was loving and sweet to Ben. Having never met the grandparents,
I printed out Donna's posts from the blog and sent them through the
caregiver. It was my way of showing that I cared about her daughter.
Just this week, I received an email from Ben's grandma, a first. I was
excited that she was contacting me. I immediately thought that we could get the
boys together. She said she had news to share, but wanted to be sure that this
was the correct email.
My brain does not go to bad places quickly. I always assume the
positive and I am, for the most part, optimistic. When at 7 a.m., I read the
return email telling me that Ben had passed, I was shocked. I cried on and off
the entire day while taking Ben to the allergist, going to the grocery store
and getting ready for a work trip. I cry now as I write this on a plane.
I agree with what Ben's grandma wrote me. God has a plan and we
may not understand it, but we must trust it. He gives us these beautiful
children who change us forever. I grieve for Ben's family that their time with
their precious daughter and grandson was cut short. I will miss Ben's smile,
but he and his sweet mom will not be forgotten. They are both a part of our
life story, made richer by their presence.
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
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
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