One A.M. Bedtime and Visiting Gaudi: 6-28-11

Late Nights, Long Phone Calls: Two weeks into our daughter’s vacation, two weeks short of the onset of programming, and the regression begins. This translates into 1:00 A.M. plus bedtime, hours on her cell with a young man northeast of here (this social contact is the good news), and resistance to “taking a walk” for exercise, after hours crunched over the laptop. Yesterday she begged to just “rest.” “I’m tired” is a favored refrain for “Let me veg out on my own terms.” Since I had to work, cool. But later that logy, groggy, irritable moodiness of the over-used computer screen kid kicked in. Yuck! Remember, these kids don’t have wheels or friends, per se, to “hang with.” Programming is structure, or mom. Minus both, and oblivion takes over…lost in techno space.

Chills Down The Memory Spine: We had years of this level of hell, almost every weekend in the school year (even with weekend activities planned), until we reached nirvana with Riverview School. Now we await Ability Beyond Disability programming. But just to see this behavior rear its unattractive head sends chills down the memory spine.

Visiting Gaudi: We do have a destination today, later in the afternoon. I try to build as many “events” into the week as possible. We are visiting a friend with a horse, Gaudi. Gaudi is a dressage horse, big and beautiful, whose master is a former television actor whom our daughter never met. As a horse lover, our daughter is eager to visit Gaudi. There is also a wild bird, a starling named Peep, who was rescued from the barn floor as a four-day old and raised by our friend, “chucked,” as she says, from its nest a bit early. The mother bird apparently had no interest in reclaiming her lost chick. All an interesting parallel to our current “chucking out of the nest” process as well. If Peep hasn’t “aged out” of the care of its surrogate mom, flying off to adult birdland prior to our arrival, it might swoop down us. Apparently Peep meets and greets by pecking heads in search of insects to munch and crunch. Hats indicated.

Rent Security: The wheels of our daughter’s future are constantly turning, even as all seems a bit stagnant on the home front. Our DDS case manager and the ABD service coordinator are vigorously lining up the funding and staffing for July 1, firing emails back and forth to the moms and each other. Having laid out the first half month’s rental and two months security, both moms inquired if we could be reimbursed by rent subsidy allocations for the security. I received the answer today. Nope. So the outlay for security plus the furnishings and much else is the burden, or the privilege, of the families. One has to wonder how clients with fewer family resources do it? We are constantly being reminded that the girls’ budget is super tight and has to make it through the 12 months for which it is allocated. Should I be scared or wise or both? New turf here.

Another Special Needs Mom Blogs: A new subscriber sent me a link to her own blog, Embracing Special Needs Parenthood. She is parenting a nine-year old and pens a poetic, enlightened blog on her perspective as a special needs mom. Take a look and enjoy.

©Jill Edelman, M.S.W, L.C.S.W. 2011

2 Responses to “One A.M. Bedtime and Visiting Gaudi: 6-28-11”

  1. emily

    i read your comments on the regression and had to smile… i will definitely share your comments with my other daughters who seem to feel that their sister is the only one who regresses because i let her 🙂


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