eSpecially Ben

  Ben met Doodle today. One of the staff at his day program brought him in. Ben loves dogs and these photos made my day. 

Marjorie and her grandson, Graham Guest post by Marjorie Frick My name is Gee or Grammy depending on which grandchild you ask. I have been blessed to raise two daughters and have five grandchildren, four boys and a girl, all under the age of six. Our oldest grandchild, Graham, was born with a rare genetic disorder called Cri du Chat or 5p- . It is a deletion on the p arm of the fifth chromosome.  During the first few months of Graham’s life, we began to pick up on small clues that there might be something amiss. My daughter fought to be referred to specialists and to get some therapies started.  Graham was missing some milestones. Two of the biggest issues were feeding difficulties and sleep.  After receiving genetic counseling, we finally got a diagnosis at about seven months old. This was one of the worst days of my life.  It helped me see that one of my most important roles in being a grandparent to Graham was to be a parent to my daughte...

  "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

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 ...