Skip to main content

Glimpses of Ben

For the first week out of school, I jam-packed it full of fun stuff to kick-off the summer. For the most part, Ben took all the goings-on in stride, but mostly he looked bored and tired.

Finally at the pool, I saw a glimpse of the real Ben,  laughing and giggling.

After finishing lunch, Ben kicked Kim (our long-time friend and community helper) and laughed like it was the funniest thing in the world. Once she caught onto his game, she teased him which made him laugh harder. He was trying to kick her and then push himself backwards in his wheelchair. When Ben slowly inched his foot toward Kim's leg, she'd "yell" at him to stop and that would get him laughing harder. Great fun!

Later Kim got Ben to kick his feet in the water and then splash his hands too. I am hoping this is just the beginning of getting Ben back to where he was before the recent seizures.

Later the same day, Ben had OT with a brand new therapist. She got to see some of his mischievous behavior and quirky personality. To get away from her, he crawled onto the couch giggling the whole time.

These glimpses give me hope that the Ben we know is still there, perhaps just hidden by medication and seizures. We see the doctor this week and I hope to get some answers, solutions or at least a strategy to help Ben.

Comments

  1. It's been a long time since I've caught up on the blog...sorry to hear about the recent seizure activity, but glad he is getting back to Ben.

    Love from afar,
    Dena

    ReplyDelete
  2. What cute pictures! Good luck at the appt.

    ReplyDelete

Post a Comment

Thank you for reading my post. I appreciate you taking the time to comment. If you wish to contact me directly, please let me know and I will email you.

Popular posts from this blog

How I Make Being a Mom and Volunteer Work at this Group Home

  In September, Ben celebrated three years living in a group home in Charlotte, North Carolina, with five other men. Ben lives 20 minutes from our house, and we see him several times a week for doctor's appointments, to drop off supplies, for group home events and sometimes because I just miss him. Ben occassionally sleeps over, and he often spends a weekend day hanging out on his favorite couch, watching videos at our house. This Easterseals PORT Health home is Ben's second placement. The first placement through another agency didn't work out, and he left after six months . We were wary of trying a new place, but it's worked out well. My husband, Ryan, and I have developed a partnership with ESPH. Over time, we've built mutual respect and trust with the residents and staff.  Here's what's worked for us: 1. Get involved with the group home. Ben lives with five other men in a six-bedroom house in Charlotte. On move-in day, Steven, one of the residents, made ...

Gadgets & Gizmos - Part 6: Landeez Chair

We spent last week at the beach near Atlantic Beach in North Carolina. At Fort Macon Park , they have a special chair for people like Ben who may need extra help moving in the sand and water. The chair is made by Landeez . We were amazed by this chair. It did travel over the sand and in small amounts of water with ease. We bought an inexpensive strap to go around Ben's waist so he would not fall out.  I thought that Ben could go farther in the water sitting in the chair, but it does eventually float...away if in too deep of water. Ben got tired of sitting in it and wiggled his way under the strap. For the most part, it is a great invention and it made it easier for us to keep Ben safe on the beach. If he had been interested in a long walk on the beach, this would have worked great for him.

Parenting an Adult Child with Disabilities: From Group Home Placement to Discharge

  Last August, we moved Ben into an alternative family living (AFL) placement, about 90 minutes from our home in Charlotte. It was a three-bedroom house and Ben was given the largest bedroom with its own bathroom.  A typical AFL in North Carolina operates like this: a person with disabilities, the client, moves in with another family, couple or an individual. The client lives in the family’s home and the family receives payment in return for housing, feeding and caring for the client.  Ben’s AFL was unusual: A couple with extensive caregiving experience wanted to run a three-bed group home but needed to apply for the license through the state. They were willing to take Ben as the first resident in a house, separate from the one they lived in. The plan, according to the couple, was to get approval for the group home within a couple of months.  We ordered Ben a double bed, headboard, 54-inch television, new sheets, towels and blankets. Friends helped us move him in....