If your special-needs parenting life is anything like ours, you’ve been riding the never-ending roller coaster of good days and bad days for as long as you can remember. Our son, age 25, has autism and intellectual disability. Equal parts wonderful and challenging, Cooper has given us a run for our money for more than two decades. The rhythm of our life revolves around his fluctuation between good days and bad days.
The good days are really good. Cooper is happy, affectionate, and kind. He participates in his normal activities, wants to be social, and eats and sleeps normally. He is a genuine pleasure to be around. But then the bad days hit us like a ton of bricks. Cooper is obsessive and agitated all day. He engages us in his obsessive loops and when they can’t be resolved, his agitation escalates and sometimes he becomes destructive and violent. He swears like a drunken soldier and has unrealistic expectations of everyone and everything. He cannot cope with the normal, unexpected challenges of everyday life, such as dropping something, rain, a change of plans, or slow internet. He only sleeps a few hours each night which compounds his agitation and irritability. To say that the bad days are stressful is an understatement.
On the bad days, we hunker down and get through it. We adjust our expectations and schedules and devote our attention to getting through each hour without incident. We endure the verbal barrage of insults, physical intimidation, and obsessive angst by using all our energy to remain calm and help him through it. We employ all the strategies we’ve learned and use all the tools we’ve added to our special-needs parenting toolbelt over the years. Regulating sensory inputs, distraction, delay, low arousal, ignoring, and most importantly, not taking anything personally. For days on end, we feel like we are being followed around by our own personal rain cloud. It’s oppressive, exhausting, and takes WORK to get through it.
And then, the good days return. Respite. We poke our heads out of the foxhole and look at each other with gratitude that we survived. It’s easy to want to take some time to feel sorry for ourselves. To use the blessed reprieve to wallow in it for a while. And we have done that. But then we remind each other to savor the good days. We intentionally take time to make happy memories with Cooper. Play a board game, fly a kite, or go to the zoo. We laugh at his silly antics and stay in the hug a little longer. We appreciate the ordinary-ness of relaxing and watching tv or sitting on the front porch with a book. We tell Cooper how much he is loved while his heart is open to hearing it. We know the bad days will return. But rather than waiting for it, dreading it, and being angry about it, we store up the treasure of the good days in our hearts. This is the fuel that helps us get through the bad days.
-Celeste Shally, Direct Support Professional for Myers-Davis
Celeste Shally is mother and full-time caregiver to her adopted son with autism and intellectual disability. She is the author of While We Wait: Clinging to Christ in the Trenches of Special-Needs Parenting and two children’s books, Since We’re Friends: An Autism Picture Book and The Bully Blockers: Standing Up for Classmates with Autism. She and her husband, Mike, and their sons Cooper and Jaxon, live in Northwest Arkansas. Celeste and Mike lead a ministry for adults with special needs at their church in Gravette, AR. Celeste regularly blogs about caring for her son with special needs at www.celesteshally.com.
