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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

Throwback Thursday: Sleepless in the Carolinas

This was first published in 2013 and unfortunately, we're having some of the same behaviors again. Ben's been waking at 2 a.m., not knowing exactly what he wants and where he wants to be. On some of the worst nights, he moves from his bed to the couch to the refrigerator, then to his favorite armchair and back to his bed again.  This takes at least an hour and I am following behind him as he makes his way. It would be unsafe to leave him to his own devices in the middle of the night.  Since this post in 2013, we have charted Ben's sleep, daily routines and behaviors. We've noted that he wakes 10-15 times a night each month. It doesn't seem related to how much activity he's had during the day or what food he's eaten. Many families with a child with a disability face sleep issues. Sleeping pills, essential oils, solid bed routines and begging our child to sleep don't seem to work all the time. If you see us walking around, looking like zombies, this could

Parenting an Adult Child with Disabilities: Reaching for Independence

  In 2012, the editor of Charlotte Parent asked me to write a short story about Ben for the magazine's April issue. " A Goal of Independence " was my first published piece and the beginning of my career as a professional writer.  When I wrote the story, Ben was 8-years-old. At the time, I recognized how important it was for us to assist Ben in becoming independent. As a mom, it's hard to let go and easy to just do the task for them. I shared an example in the Charlotte Parent story: Ben's brothers scolded me for feeding Ben, rather than letting him feed himself  Ben is almost 19-years-old. He’s lived 90 miles away from us for six months in an alternate family living situation. Although we visited him two to three times a month, I didn't notice how much he matured until we brought him home in mid-March.  He's calmer, more alert and attentive. We've been able to decrease behavior and sleep medications significantly. We'd tried this in 2020 with disa

Parenting an Adult Child with Disabilities: Questions to Ask at a Group Home Visit

  When our son, Ben, turned 14, I started researching group homes in North Carolina. I visited one large facility and one six-bed group home. I felt overwhelmed, sad and scared after those two visits. The experience made me aware of how difficult the process would be, both emotionally and mentally. Although your child may have a case manager to help locate agencies with group homes and alternative family living placements, most of the process is up to the family. Once you narrow down a placement, here are questions you might want to have answered: Staff How are staff vetted for employment? What experience does the agency have running group homes? How many staff are on duty throughout the day?  How does the agency recruit and retain staff? Is someone awake during the night in case my child needs assistance? Home Who are they looking for to fill the space within the group home? Co-ed or single gender? What's the layout of the house?  How many bathrooms?  Does each person have a priva

Parenting an Adult Child with Disabilities: Legal Guardianship, Medicaid and SSI

I'm Ben's unofficial and unpaid administrative assistant. I keep his files and medical records and stay in touch with therapists, doctors, teachers and equipment providers.  When Ben reached 17 and a half, I started the paperwork for him to transition to adulthood. His care manager encouraged me to get the forms filed on time, otherwise, we could run into problems later. The information below is based on my experience. Yours may be different; every family has its own unique situation. Conduct your research, ask questions and if you need to consult an attorney, please do so. My story is not meant to serve as legal advice. Here's what I did: 1. File for legal guardianship.   Each state has its own set of rules for legal guardianship. We filed in Mecklenburg County in North Carolina and it was an easy process. I filled out forms online six months before Ben turned 18. I went to the courthouse with the forms, signed additional documents and paid a fee, around $150.  North Carol

Parenting an Adult Child with Disabilities: Guest Post - Matt Wilson

Matt and I attended high school in New York together. When he saw the announcement about "Parenting an Adult Child with Disabilities"  on Facebook, he commented on it. I like to get varied perspectives on "eSpecially Ben" and asked Matt to write about his son, Harrison. And it's always good to connect with a high school classmate.