Polo and Work: Dad reported wonderful things about our daughter’s Pegasus riding yesterday. The students were mimicking polo play, holding foam sticks aimed at balls on cones; even the horses were being trained to nudge the balls off the cones. She trotted, rising high in her saddle, followed by leaning so far forward that a photo dad took of that moment makes it appear that she had either passed out or was taking a snooze.
Work Takes Precedence over Painting: After this brief sojourn in our daughter’s equine world, dad did not indulge his desire to wash a canvas with the oils of verdant green and sky blue. Instead he went off to work. Her dad works on weekends often to make up for time taken off for travel, family reunions and graduations (our daughter had two of those just this spring). The back-story to our daughter’s tale is the parental push to fund much of what isn’t being funded by the state. And state funding only kicked in July 1. Prior to that our daughter received a minimal amount from SSI since the age of eighteen, which we basically used to help pay off her orthodonture. An unspoken thread running through all these posts is the financial pressure that our family and others feel to provide for special needs children, and all children, as they travel the road to independence. I often work late at night, and basically whenever anyone wants to see me. My husband, though of retirement age (which I will be in six months), can not retire, nor can I. Part of that is related to the need to wait and see where our children wander and what they need.
Earning Power: At this point, I have no idea what our daughter’s earning power might be in future years. And whatever she does earn, after a certain point, is subtracted from what the government provides. Therefore, the idea that someday she will not need us financially to supplement the government is not even on the plate. No way. Therefore the usual consideration of “inheritance,” though it cannot go directly to her, but to her supplemental needs trust, is a further incentive to keep working. For both our children. And what would we do if we didn’t work? Well, that’s pretty clear. The hubby would paint, and the wife would write. No problem there. I know that families far more strapped than we are face similar questions every day: how to protect the special needs adult from living a financially stressful existence, dependent on government entitlements that might fade away with every passing year.
No Sacrifices Here: I haven’t any complaints nor do I see any of this as a “sacrifice.” Putting our children’s needs in the forefront of much of my life planning has grounded me, urged me forward to be more than I ever imagined I could be, and given back to me in spades…the loop of caring that I tell my patients to look for in all their relationships. You give and you get. Not gratitude per se, nor even any obvious declaration of devotion or love, though that is there, implicit or explicit. Rather, the sheer enjoyment in “sharing” in their lives, their discoveries, their challenges. I find it all a great deal of fun.
Planet of The Apes: At 9:15 a.m. today my cell phone rang. Daughter announced that since it was raining, she and apartment-mate are off to the movies. “We voted on which movie to see,” and ran through the list of options. The apes won. I told her how much her dad enjoyed seeing her polo play and she said there was a moment when she felt a bit afraid but tightened her hold on the saddle. Good job. Then I asked her if she wanted to plan to see me this week. Nope! I love that. Touching base with mom is quite enough, thank you.
©Jill Edelman, M.S.W., L.C.S.W. 2011