Everyone for Ethan

This is from one of my dearest and oldest friends, Michele. She and I went to high school together many moons ago. We have managed to stay in touch over the years seeing each other when we can. Her son, Ethan, is a beautiful little boy with a very rare disease - only 100 people have it in the world. She and her family have had a lot to go through over the past few years.

Recently, her friends got together to plan a fundraiser to help with some of the financial burden. She recently sent me these words and they affected me so much that I asked if I could reprint them and promote the fundraiser:

Actually, we really have nothing to do with the fundraiser...I really have been very private about it but my friend from the gym is a bigwig at a bank so I went to him for advice about our mortgage...We haven't been able to pay it in a year! My friends from the gym all got together and came to me to tell me they were having it for us!! There has been so many kind and generous people in the community from family, friends, coworkers, acquaintances and even strangers!! It really has restored my faith in people and gives me a new found hope in our situation!!

Check out the site on Facebook:

Everyone for Ethan

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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

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....

Ben is thriving in his group home in Charlotte. I wrote about what he's been up to in this story in Southpark Magazine: Givers: All together Happy Holidays! Photo Credit Grant Baldwin Photography

eSpecially Ben

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