Our day starts around 5 am, at least that’s when we haul our bleary butts out of bed for the last time. Most nights we are up a few times before that. Our son, Ben, has Down syndrome, autism and complex medical diagnoses, and sleep doesn’t come easily to him. We have come a long way since the days when he was up more than he slept at night, but sleep is often still elusive.
We hit the ground running in the morning with meds and catheterization, both of which are a struggle. The thing about the combination of intellectual disability and medical complexity is that my son doesn’t understand why we have to do all of these unpleasant things. It’s not fun for anyone to start the day with a cocktail of meds and a catheter, but when it doesn’t make sense to you, it’s only natural to protest, and protest he does.
After breakfast we help Ben get dressed. Ben is ambulatory, but still struggles with his daily living skills. When time permits before school, we work with him to teach him how to put his own clothing on. Teaching daily living skills is time consuming, but worthwhile if eventually Ben is able to achieve independence.
Once he’s off to school I change gears, shifting into administrative mode. I draft texts and emails right away, and start making phone calls once offices open. A normal week has a standing therapy appointment and often at least one doctor appointment, and enough calls for insurance, medical supplies, school communication and whatever else arises to be a part time job for me. I don’t earn an income doing this work, but my advocacy with insurance and checking on bills saves us hundreds of dollars a month.
A few times a year Ben has a day or two of specialist appointments that we travel to a regional children’s hospital for, and spend a night away from home. It’s been a couple of years since a major surgery or hospitalization which change everything up.
When Ben returns home from school we have medical procedures, dinner, more meds, and bedtime. Ben’s bedtime routine rivals the most creative toddler, and would give Supernanny a run for her money. Even following all of the “rules” for a no-nonsense sleep habit, Ben is up a few times before finally settling down for the night.
When he is finally down for the count, my husband and I coordinate our schedules for the next day or two over a cup of tea. We have two other children whose needs have to be met as well, so there is a lot of juggling going on. Ben’s needs are pressing but we are also intentional about prioritizing our other children. My husband works full-time and I work part-time from home, so most of the daily tasks fall to me, but we work together with the efficiency of a Nascar pit crew. We fall into bed early each night, in hopes of getting as much sleep as possible before hitting the ground running again the next day.
