what's going on

The ETA for my wheelchair was supposed to be yesterday. However it is apparently being shipped from Washington State today, so really should arrive around the end of this week. Perhaps ETA was really ETC – estimated time of completion? This is still pretty good I think. The frame has to be custom built then painted, not all the parts are premade. Putting a chair together is more than just assembly. I think a 3 week order to arrival time is pretty decent.

The brakes (wheel locks) were still an unknown till an hour ago. The company that makes them is local, but is pretty much a one man shop. Maybe he has some assistants that help him build the locks, but he answers the phone, does the orders etc. all by himself. If he’s out of town, jobs lag behind. I don’t think the order for the brakes was really put in 3 weeks ago when the chair was ordered. So, now Mobility Solutions has been trying to reach him by phone (they say), and haven’t gotten a call back. I thought he might be traveling somewhere, which meant that he might not be checking for phone messages, but he might answer email. Last time when I had a question for him, I emailed him and he replied right away that he was out of town (at an East Coast Abilities Expo) and he’d call as soon as he got back – and he did. He was very personable and helpful. So, around 5 PM after Mobility had had the full day to wait for a call back, I sent an email directly. And an hour ago he replied – he had the order, would ship it tomorrow to arrive Thurs or Friday and no one from Mobility had tried to contact him by email or phone. So, what gives here?

Now it seems everything will be at Mobility by the end of the week, maybe I’ll get in there early next week for adjustments and have it home a week from now!

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My wrist has bounced back much faster this time. Either it really is somewhat healed, or I’m getting better at knowing how to rest it.

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San Diego Opera called today to say our Renewal Deadline has been extended. I said we weren’t going to renew and they wanted to know why. So I told them their wheelchair seating at the Civic Center sucks, in so many words. I found out something interesting. Apparently, the wheelchair seating at the back of the Dress Circle and the Mezzanine, used to be the Standing Room area. When they had to comply with the ADA, that was the best they could come up with – giving wheelchairs the area that was only good enough for Standing room. Groan. I asked the woman who called if she would be happy if those were the only seats she could have, and she conceded “No”. I considered going to Avenue Q this summer. I saw it a couple of years ago at the Spreckels (I think it was the Spreckels, some theater downtown) and I loved it. But this time it’s at the Civic Theater, where the opera is. The last row of the Dress Circle for Ave Q, the Standing Room area that was, tickets are $90 each. Jim can’t go, and I just can’t see dragging any of my friends to sit in that back row and watch a show with binoculars. My son David got tickets, granted with a Qualcomm discount, in the 10th row for about $90. I really am thinking of filing an ADA complaint, though technically I should write to the city about the Civic Theater first.

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To anyone who gets electricity from SDG&E and has a disability or uses some medical device that needs electricity – do you know about the Medical Baseline Adjustment you can get? To see if this applies to you, check out: http://www.sdge.com/documents/customer/baselineapplication.pdf

I wonder how many thousands of dollars I’ve given SDG&E that I didn’t have to. Apparently rehab centers here tell people they can get this discount. Perhaps every person I know with a disability in San Diego has gotten this and assumed I did too, but I had never heard of it till recently, and never thought to ask. I don’t know when the discount started (with the ADA?), but I’ve lived in San Diego from 1979 – 1995 and 2004 till present. Maybe this isn’t fair to everyone else without a disability, but I am going to take advantage of this now. I won’t try to recoup lost money, probably couldn’t anyway.

I wonder if they had this discount in Maryland and Ohio too? Better for me not to know.

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It is clear to me now, that my trying to write to my father was getting me down. My siblings no doubt will wonder why I let him bug me. They seem better able than I to dismiss him out of their lives. I can’t help it though. There was once a time when I thought he was so wonderful, and I was proud of him. Now, it’s just so hard to find anything in him worth knowing. He’s still alive, I assume, though I don’t know for sure. I trust that his wife would let one of us know if he died, but that trust may be misplaced. I don’t think she’s ever contacted any of us directly about anything before. Well, I think she may have called once when she had a solo business trip to San Diego, was that 2005? And they’ve been married since the early 1980s I think. I don’t know what year it was, wasn’t invited to the wedding. I was living in San Diego by then. One direct call in almost 30 years? Not that Dad calls me much, his record is about once every other year lately. If we talk, it’s been because I call him.

I had set a rule to not talk about people who were living in this blog, at least not in negative ways. At the moment I’d say my father is about as good as dead, but I’ll believe he’s alive till informed otherwise. And perhaps one day someone will read this who knows him, or perhaps he’ll even read it himself. (That’s probably some daughterly hope that won’t die popping up, let it go Donna, let it go.) So, I’m going to stop here.

But I have to say one more thing about both my parents really, or about myself in relationship to them.

There are a lot of things I want to talk about related to parenting with a disability. Parenting from a wheelchair brings a lot of challenges, you need to be creative in how you solve things, and make adjustments. I frequently talk in my blog about how things are different for me because of my disability, or of the nuisances that comes with having this equipment. I could, and I might, talk about parenting that way. I believe though that fundamentally parenting with a disability is much like parenting for everyone. It’s a difficult job that most of us are not really trained for. Perhaps those who have a lot of younger siblings that they took care of as children are better prepared. Certainly people who have worked in daycare or studied early childhood development have an edge, though no amount of education prepares you for a crying baby at 3 AM. The job of mom is much the same for all of us – how to keep a baby warm, dry and fed; how to entertain a toddler but keep him out of danger; how to educate a child and help their self-esteem…. All of us will find an age that we feel most comfortable with. Some women love babies, some love teens. I liked the age from 4 – 8, but 8 – 12 was very good too. Old enough to reason, but young enough to still be so fond of their parents. I’m not saying anything new.

Through all of this, we bring our own baggage, what we got from our own parents. And at times it is hard to know whether having a rough time with a particular issue is because of the difficulties solving a problem due to a disability, or because of some issue carried over from our own childhood, or as a third option – from a normal development of our children. An example – when a toddler first really learn to run they often are anxious about separation. I remember David especially having separation anxiety. It was ok for him to leave me, but not for me to leave him. For me, this was compounded on one level by my fear that he would run away from me somewhere that I couldn’t catch him, and on another level by my rather deeper fears of abandonment and feelings of neglect from my early childhood. I didn’t fear that David would abandon me, or that I would neglect him. I feared that he would see me as doing this, no matter what I did. I had vowed not to repeat the mistakes (my interpretation) of my parents, but could I control how he would see my actions?

As I struggle with Father’s Day, and my relationship to my father, it reminds me that the parenting topic is indeed a complicated one. My disability added an extra layer of self-doubt, and it merits attention, another day.