Halloween’s Haunt: Every year as the leaves drop and front lawns are bedecked with spider webs, dangling sheeted ghostly figures, and wondrous ghastly creatures, our daughter gets sick. By Halloween night or a few days later on her birthday, she is either on Zithromax (yes we have tried the naturopathic route) or at least Mucinex (and this state of quasi-illness can go on for months). And sure enough when I rang her up this a.m. she reported the stuffy nose, scratchy throat, beginning cough condition that raises the hairs on the back of my neck and sinks that pit of fear deep into my tummy. Oh no. Just when she is about to do her training at ROAR, scheduled for this Sunday morning. I am haunted by years of aborted missions due to our daughter’s physical stamina weakening all aspects of her tolerance level and sure enough, this was already happening. The new vocational life skills staff person and she had one of those moments where our daughter felt bossed due to a misunderstanding, time constraints, a cold and perhaps poor preparation.
Spirals of Anxiety: So familiar. I feel spirals, spirals of anxiety, the domino effect that mothers know so well…starting with the birth of our first child. If they don’t nap, if they don’t burp, if they don’t suckle well…then this, then that. Spirals so well known and visualized for many years, that my overreactions, though exhausting, are also worthy of mockery, teasing and general merrymaking, at least by friends and relatives. Jeez Jill, relax.
Nip It In The Bud: I have already sent out probably three verbose emails since 9 a.m. and that’s while working two hours where I am fortunately unable to communicate with souls outside of the couple sitting on my couch. By 9:30 I had spoken to the ABD nurse and two staff about how to intercept and ward of the deadly “sinus” infection with Mucinex-D and lots of rest, encouraged them to make sure a bedroom window is open a tad at night to allow in some moisture to offset the dryness of the heating system and counseled everyone to work hard to keep this cold just a cold, nip it in the bud, or else. I will also be heading over to the apartment later to check her out myself, eying her eyes for signs of those deep blackish rings that are the hallmark of her sinus infection (though mom has those rings daily, mine are chronic/genetic, hers just infection).
What’s Your Worry Lady? Well, let’s see. This time my focus is the ROAR training, the animal shelter we have been waiting on since early summer. Scheduled for Sunday, if she is too pooped, she won’t go. (And I don’t know when they reschedule.) Oh no. Is that her problem or yours? Hard to say. I hate to see her disappointed, but sometimes she isn’t and I am. Worth mentioning here is that I always locate something on which to focus my anxiety: a dance, a family party, a Broadway show, a neuropsychological testing session, (she had serious Lyme disease when interviewed at Riverview, her boarding school, but still got in) an opportunity that will be marred by a sick girl who is too tired to attend or attends and then melts down during the proceedings. This is not a young lady who pushes through her distress to accomplish some preset goal. Two decades of this yet nothing horrific has really occurred. ROAR will reschedule and life will go on.
A Visual Schedule: Is anything new under the sun? Not the basics. This week Ability Beyond Disability had their “Disability Mentoring Week”, a program (and a permission slip I signed a month and a half ago and had no memory of) where clients are taken to various work settings to view employees on the job. In our daughter’s case, she went to the Post Office, a vet’s office and today was suppose to visit Olive Garden’s kitchen. However, no one really spelled out to her what the theme was, the purpose of these visits, and in general why they were keeping her from the Park and Recreation center treadmill and pushing her to go to the DSO (Day Services Option) on a day she normally doesn’t go. I didn’t know any of this until my conversation with our daughter this morning when she vented her anger at the new staff, whom she referred to as Ms. Bossy, who wouldn’t let her work-out: “You always say how important that is Mom.” and “I miss Laura,” the lady who dared to leave after winning the girls’ hearts. After speaking with the residential coordinator, I made sense out of some of this disconnect. Our daughter had no idea what the goals were, why her schedule was changed and had, with a new staff person stressing under her own pressures, oops, a bad moment and, in the hustle to leave, a forgotten lunch bag. Back to the drawing board. After emails and phone calls, the team will now put in place a visual weekly schedule (I guess no one read the recommendations from her school as to the necessity of this piece), collaborating with our daughter to make one on her computer, with weekly copies coming to me so I can make sense out of what our daughter is saying. (Imagine my confusion when she said she went on a tour of the Post Office.) She vents to mom and I need a script to follow along.
Good News: But much is good. She loved the Hoops event last evening and apparently was involved in a ceremony welcoming the new Commissioner of The Connecticut Department of Developmental Services when he came to Ability Beyond Disability, having been chosen to hand him flowers and apparently saying some words about how happy she is in their new model program, the CRS. How did I learn of this little bit of sweet information? By accident. I don’t mind not knowing all the good stuff (and I also don’t know if that was fun for our daughter, I will ask her) but I need to know enough stuff because my daughter brings stuff to me. And it all takes time. If they inform me of the “stuff” then I can spend less time running people down to fill me in. Time is money for me. But time is what our daughter will always need…it still takes lots of time to be a mother, no matter the needs or ages of one’s child. Right? Yep, I can hear y’all. Yes indeed. So don’t sign on to the job unless you have a lifetime of time for your offspring. Oops, times up. Back to work.
©Jill Edelman, M.S.W., L.C.S.W. 2011