Skip to main content

New Yard Stick

I started this post a thousand times in my head and it was always called, Acceptance. I was cleaning up a pile of papers and came across a note with the same word written on it - a reminder to myself to write a post about this topic. Then I was reading an emotionally laden fiction book about family and it talked about the stages of grief, but acceptance was introduced to me for the first time as reconciliation.

I thought about writing about the people around me who need to reconcile their thoughts and feelings about Ben - everyone from close family members to strangers we see on the street. Adding to the stress of having a son like Ben, is dealing with everyone else. But that's not fair - everyone is at their own place, on their own journey and try as I might judge other's level of acceptance, I am not in the position to do so.

After many rewrites, I decided to talk about my own journey through acceptance and reconciliation - whichever word feels more comfortable. In thinking about these words, I realized that every day we make a decision to accept changes and differences - they can be small, like having to shop at a different grocery store because your usual one is under renovation, they can be large - someone you care about is diagnosed with an illness. As I thought about this, it helped me see that as humans, we are reconciling and processing so much each day - some of it emotional, intellectual and physical.

When Ben was a baby and so much was unknown, I cried for the imagined losses he would have in life, these imagined losses being the ones I defined for him.

At nine years old, those imagined losses are meaningless. Ben's gains are so much more than some adults will ever achieve. I learned that I cannot use the same yard stick on Ben that I use on myself, and I ask that others do not do that either. Accept him for who he is right now. Reconcile your own thoughts and feelings by understanding that applying your imagined yard stick to his life will always make him come up short. Throw that one out and get a new one...something with the metric system...that may just fit the bill.





Comments

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....