The Two O’clock Hour: Our daughter went to sleep at two in the morning after Friday night’s birthday. Though evening staff has a role to ensure that the girls shut off cell phones and laptops by 10 P.M. to enable them to wind down for a decent night’s sleep, somehow our daughter managed to keep connections alive well into the wee hours of the morning as evidenced by her brother receiving her texts well past midnight. Where was staff?

Variables: Sure, there were variables, birthday excitement, 9 P.M. ice cream, and anticipation of the next day’s continuing celebration. But there are always variables and transition from wakefulness to sleep, and sleep to wakefulness has plagued life with our daughter since toddlerhood.

The Hated Vicious Cycle: Naturally, though much of the Saturday celebration was successful, parts of it were blighted by our daughter’s hyper fatigue (not an oxymoron: exhausted and endless complaining has an energy that doesn’t stop, like our house alarm battery that kept beeping even as it was dying, all night long during the latest storm.) She had to rise early to attend Pegasus riding class and by the time she joined us for the second half of her birthday festivities, she had that grumpy, frankly annoying thing going on that has spoiled many an outing, many an hour of family life, her life, and her performance for two decades. I found myself, after the first hour or so of hearing about how the staff made her get up that morning and blah, blah, blah, ready to fold up the mother tent and hide in a cave.

Issues Don’t Change: Yes, the ABD (Ability Beyond Disability) staff has been informed and chats will take place between daughter and staff (they have a residential meeting once a week with the staff behaviorist), cells and laptops will be taken away at night if necessary to avoid another recurrence. The residential director is trained to do this without casting a punitive spin. Better she than me. For me, boy does it bite. When you try to connect the dots, make her responsible for her time, and yet be empathic with how awful it is to be awakened “early” and exhausted, she says “It isn’t my fault.” and though you struggle to explain that this isn’t blame, just an attempt to show her how to do it differently next time and check her clock (“I forget to look.”) or realize staff needed to rouse her in time for horse back riding, all aggravates her further. Yet, if you provide no feedback, hoping that the issue will dissolve on its own, like a bad smell, she engages again and again, unable to shake off her discomforting feeling that somehow she is to “blame.” Try distinguishing blame from owning, victim from being a player in her own destiny, try it. I have for twenty years and it isn’t easy. Best left to others I suppose.

The Antidote Is Humor: Last evening I told my husband that I was and am amazed that I didn’t develop a serious cancer or an auto immune disease over the many years of struggles such as these, when hours of paralysis and/or chaos descended upon our family, each day, with me typically alone at the helm, trying to preserve one precious child while the other, equally precious though not necessarily in that moment, unraveled before our eyes, taking down hours of happiness, peace or just mediocrity and replacing them with a sense of failure, incompetence and guilt. There is no answer to why I was lucky except perhaps the gift of humor, always my savior, always my life force, why I chose the husband I did, and why at the end of the day, with my body literally vibrating from tension, he would spin a phrase so apt and so funny that whatever the actual chemical antidote to disease, this for me certainly must be it.

©Jill Edelman, M.S.W., L.C.S.W. 2011