At the time Kimberly Ezequelle moved her non-verbal son into a home with other individuals with disabilities, no one but her had taken care of him, and she did not trust anyone else to do the job. She noted that she received a lot of support from BCArc and others, but the process was still emotionally excruciating.

“I’m grateful I lived to see Donovan thrive and feel safe in his new environment, and that he no longer depends on me,” Kimberly told more than 100 attendees of the online Family Support Conference “Planning for the Future,” presented by Berkshire County Arc in April. “Make the transition while you can. Do not wait for it to be an emergency. Do it while your guidance and presence can be there. And while you can make choices.”

Rabbi Barbara Cohen, with her adult son Alex, affirmed that “We are not alone, we are all here to support each other, as a community. We can cry from all of our stories, but they are tears of resilience.”

Donna Narey looked forward to making plans for her teenage son Cole, and talked about laying the foundation now for the years to come. “He deserves to be part of the community. He may seem to run from the action on the basketball court, but that’s him being part of the action. We look forward to planning his future and finding his place in the community.”

While each family described unique challenges, there was a shared need for community.

“Make the transition while you can. Do not wait for it to be an emergency. Do it while your guidance and presence can be there. And while you can make choices.”

Cohen encouraged listeners to “steel yourself from the looks and judgment you will get from people. Persevere. Get out there. It’s worth doing. Take your lumps. We want the world to know about our family members.”

Her son Alex showed an uncanny knack at finishing his mother’s sentences at the right moment with the right words, prompting smiles from the faces on the screens.

Cindy Hubby, with her Aunt Jean, told a different story. When Aunt Jean suffered a brain injury from a horse riding accident  as an adult, she needed care and moved back home. When her father suddenly passed away, Cindy stepped up, bought the house with her husband, and moved in with their children to provide the stability Jean needed.

Jean was already established in the community with sewing classes, a therapist, a boyfriend, and a number of volunteer positions throughout the week, Cindy explained. “Now we all live together, three adults, and three kids. We all compromise, communicate, and sacrifice a little to make it work. You need to go slow during heavy life changes and work together.”

Donna, who kicked off the session, urged families who learn about their child’s condition – such as Down Syndrome, autism, or cerebral palsy – to still see him or her as your child. “He’s your baby, enjoy your baby, you are lucky to have him.”

The conference also featured keynote speaker Frederick Misilo, who spoke about estate law for special needs planners, along with break-out sessions that covered topics like taking care of one’s self while caring for a family member, and estate planning.

Coordinated by BCArc’s Advocacy and Family Care office, notable contributors to the conference were Sonja Stewart, Ida Patella, Nancy Willey, Kristen Cogswell, Barbara Stein, Jill Wollins, Ellen Lomaglio, Chris Ferrari, and David Singer.

To see videos of the conference:

Click to see The Family Panel described in this article above:
www.youtube.com/watch?v=U9_zklxhpMY

 

 

 

 

 

 

 

 

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