Skip to main content

Uncovering Ben's Strengths, Part 1

It will be almost a year since we started using the NOVA Chat with Ben. It has opened up our minds to what Ben is capable of learning and doing. Ben's neurologist has been intrigued by the device and Ben's use of it. In our spring appointment with her, she suggested we take Ben to a neuropsychologist for testing.

I did not follow-up with this suggestion until  a few weeks ago and lucky for us, they fit Ben in immediately. I knew I was dealing with a different type of doctor when I received an email from her asking if we could talk on the phone about Ben. I was not available to talk because I was working crazy hours at a five day conference in California, so I referred her to eSpecially Ben. I think she read it that night because she got back to me and changed her strategy:

1. We need to use the NOVA Chat for testing
2. We need to get Ben's OT involved
3. We need to do the testing in 30-60 minute increments, rather than the usual 3 hours

At our first meeting, she had a Bob the Builder video pulled up on her computer. She also recommended a few things that she thought would interest Ben based on what she read about him and what I told her about his interests.

Rube Goldberg Machines - I did show Ben this quick video and he seemed interested in what they were doing. I emailed the company to see if they have longer videos of their contests. If the boys want to build one at our house, I think that would be great too.

Frigits - This is something we can get for the house relatively easily. They are not as exciting as the Goldberg machines though.

The doctor also shared a resource that I had not heard of before:

Do It at the University of Washington

This was the first meeting and the doctor did get to see a bit of Ben's personality come out - he gave high fives to the two young women proctors and deliberately did not give the doctor one. Ben did not complete any of the testing that day, but we scheduled a time to come out with the OT.

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....