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
These stories describe our journey with Ben, our oldest son. Ben is a sweet and energetic redhead, born with a rare genetic mutation. My husband, Ryan, and I try to keep up with Ben and his two younger brothers. I intend to shed insight into raising a child with disabilities and pass on the wisdom we’ve earned over the past two decades.