Braced for Day & Night: Part 2

Ben wears this brace on one of his legs almost every night. It was made by KMO - Knee Management Orthosis. Its purpose is to stretch Ben's hamstring muscles.

We wait until Ben is asleep before we put it on because it does limit his movement. Imagine your leg in a cast and you cannot bend at the knee - that's what it feels like for him. Combined with his new ankle foot orthotic braces, Ben is standing up straighter when he walks and his heels are striking the floor when he makes a step.

Ben manages to still get around with this brace on. On too many occasions, he has gotten out of bed, opened the door to his brothers' room and crawled up into bed with Logan, effectively waking up the entire household. This is all done with one leg in the brace.

If Ben senses that we may try to put it on him, he pulls his knees tightly into his body and it takes strength and emotional toughness to get that brace on him. We know it is doing him good, but we still feel bad when it happens. He had Christmas Eve and New Year's Eve off from the dreaded brace, and since he has pulled on it so much, it is actually "at the shop" getting a little work done, so he has more time off from it.

Comments

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

"Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges. Talking About the Future Guest Post - Matt Wilson Legal Guardianship, Medicaid and SSI Researching Group Homes Questions to Ask at a Group Home Visit Referral Packet for Group Homes Getting Assistance from a Care Manager From Group Home Placement to Discharge Reaching for Independence How I Make Being a Mom and Volunteer Work at this Group Home

eSpecially Ben

Search This Blog