2 Years and Counting

Two years and lots learned. Here's a shot at just a few of those lessons:

Perspective - Each time I record a piece of our family's history here, I am able to see the growth, changes and patterns that are a part of our life. Today, when I write about Ben's amazing progress with walking, I can compare it to a year ago when our biggest concern was seizures and finding the right medicine to control them. Ben's walking had taken a "step backward" and I had not even realized it until he started walking so well in May after a change in medication.

A year ago, I was distraught over Ben's school closing, and now he may be at a place that will provide him with as much, if not more, opportunities for growth and independence than his old school.

Introspective - Keeping up with posts for a blog is time consuming. To be consistent with current topics and regular posts is difficult. Finding the right topic to write about, ones that will interest readers, is not an easy task. But I love it. Since starting this blog, my brain is always on alert for something interesting to write about. And I am a thinker, I have to mull things over in my brain before writing. This introspective piece helps me dissect situations, gaining a better understanding of the experience.

Connective - The family of bloggers and readers is an amazing one. Everyone has their own style, stories, opinions and voices, yet we still find a way to connect to one another. It should never take the place of face-to-face friendships and relationships, but sometimes connecting with someone across the world through an email or post about a similar experience is what we need at that moment. The feeling of "I am not alone in this world" is an important one.

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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

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