May Edition eSpecially Parents: Donna's Story

Hi,

I'd like to introduce you to Ben and tell you a few things about him. He's a very happy child, nonverbal but makes lots of sounds to express his likes and dislikes. We are continuously working on weight baring and strengthening his upper body.

A typical day for us is to wake up around 6am in order for Ben to ride the van to school. I pick him up close to 2pm everyday, unless he has therapy, because he doesn't have much energy after 12:30pm. I found that if I push his body too much, it weakens his immune system and he becomes sick. Common sense really helps during times like these.

Once he's home, I keep him out of his wheelchair as much as possible and we play. It's really physical therapy, but he thinks it's play time. Good. If he's too sick to lay on the floor because he has lots of drainage issues, I'll take him for a ride in the car. He loves 18 wheelers, singing, people who talk loud, and going through the drive thru. Even if it's only for a sweet tea. I pretend I'm ordering for him. He laughs so hard his body bounces. It's hilarious.

Them comes his favorite part of the day, bath time. OMG! When I say favorite, I mean it. As soon as he hears the bath water running he starts squealing and kicking. Once he's in the tub he makes sure there's more water on the floor than in the tub from kicking and splashing. It's okay though, I figure it's the only thing he's been able to control all day. Go Ben!

After his bath and a busy day, he's down for the count. If he can start off sleeping on his belly, then he's out like a light. If not, he'll hum a few courses of whatever he's singing then falls asleep. He sleeps alone. Always has. I didn't want to start something I'd had have to undo later.

Most of my friends are surprised, but if he were typical, I would have done the same thing. I have a monitor in my room and check on him often. They are more than welcome to sleep with him and get a good nights rest. Yeah, right.

That's my Ben in all his splendor. He's awesome and I wouldn't change anything about him. Need I say he's the love of my life?

Have an awesome week everyone and be blessed many times over.

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

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: 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....

eSpecially Ben

Search This Blog