The Daughter Chronicles

Thursday, August 25, 2016

The little things

When you have a kid with special needs, you need to reconcile yourself to that fact or life can get pretty bleak. I've mentioned before that I'm sad pretty much all the time, but it's a low-level, background sadness, and it certainly doesn't impede my life in any way. Every once in a while it overwhelms me, but it's usually a quick sensation and then I move on. So the big picture doesn't get to me too often, because you just have to deal with the fact that your kid is different and, in Mia's case, will never live on her own, for instance (whether she lives with us or in a group home is a discussion for the future!). It becomes your reality, and you move on.

The little things, though ... they drive me batty. Mia, obviously, needs a lot of extra "stuff" that neurotypical people never have to consider, and it can get frustrating when things don't work like clockwork. And as this is the real world, things often don't work like clockwork. Recently, things have broken down a bit more than usual, and it's been an annoying few weeks. First, her doctor situation. She's been blinking a lot recently, and rather strenuously - she reminds me of Barbara Eden in I Dream of Jeannie - and we're not sure if it's a new form of seizure, as she's never done that before. I finally called the neurologist (I kept forgetting), so we'll see if he gets back to me and if we need to figure it out. Then there's the deal with her physiatrist. I've written a bit about her physiatrist before - a physiatrist is a doctor that, unlike a cardiologist or neurologist, no one knows even exists unless you need one. She had a physiatrist at Phoenix Children's Hospital until that doctor left late last year. I had called for an appointment in October or November and they told me she had left and they were in the process of hiring a new one. No big deal, I thought - I'll just call in the spring, when they told me they should have another one, and it wasn't like it was urgent, it's just that she hadn't seen the physiatrist in a while. So I called in May and they told me the physiatrist wasn't taking appointments until July. That made no sense, but okay. I tried calling in late July, but I didn't know the phone number at that point and we had moved, so I couldn't find my old business card. I finally found "physiatry" on the PCH web site, called the office under which it was listed, and the nurse told me that she had no idea what a physiatrist was. I wasn't mad, just amused, as I told her that perhaps they should take "physiatry" off of their home page. She managed to find the right office, and I had to leave a message with the nurse ... whose outgoing message still listed the old doctor, so I didn't have a lot of confidence that she would get back to me anytime soon. I still haven't heard back, and just recently, one of Mia's therapist gave me a different physiatrist ... but of course I haven't called her yet. Finally, we need to change the way we're dealing with Mia's wrist, which is never straight because the muscles are too tight. We've been putting it in splints for years, but she eventually figures out to take them off, and we can't keep them on long enough for them to make too much of a difference. So we need to do serial casting, which is putting a cast on it for short periods of time and slowly straightening it out. It sounds like a tedious process, but we don't want her muscles to contract to the point where she'll need surgery. So we're looking for a doctor to do that, too.

The doctor situation is frustrating, of course, but not too bad. It's a bit more frustrating than usual because of the replacement doctor on one hand and a new doctor on the other, but it's yet another thing you get used to - doctors are great, but they're really, really busy, and they don't have time for us petty mortals! But then her wheelchair saga began! A few weeks ago, I tried to put air in one of her inner tubes on her wheelchair. A few minutes later the tire was flat again, which ain't good. I called the company that made the chair and told them that her tire was flat and they needed to bring me a new inner tube (they do house calls). A few days later, their technician dude showed up at my house ... without an actual inner tube. He thought she had a hard wheel - I guess that's an option - and he was prepared to install a new tire but not an inner tube. I had no idea why they sent him out there without an inner tube - I made it very clear what I needed, and they have her chair specs on file, I assume. Luckily, earlier that same day, the bolt that attaches the housing for her front caster wheels to the actual frame of the chair had split in half, and that makes moving the chair very precarious (it will still work, but if you go over any bump, the wheel would bend back and you'd basically be pushing a three-wheeled chair, which isn't good for anyone). He had a bolt in his van, so he fixed it up and said he would make sure the office ordered the part, and he even said they'd order new caster wheels for the front of the chair. Look, I painted on a photo to show you guys which bolt was broken - it's the one inside the circle in the picture below:

I called the office a few days later and asked when the parts would be in, because her tire was still, after all, flat. They told me that they would be in the middle of the following week, which would have been about the time when she started school (two weeks ago). So I was busy that week and didn't get a chance to call them, and of course they didn't call me, because that would have been ... what's the word? ... oh, yes, helpful. So last week I still hadn't called them, when on Wednesday (two weeks to the day after the guy originally came out to the house), the other bolt broke. Sheesh. I took her to school and asked them for duct tape, and I wrapped that sucker up, and when I got home I called the wheelchair place and asked if the parts were in. The woman told me they were (she didn't say anything else, so I have no idea if they came in several days before and they just had decided not to call me or if they just came in and I was on their call list for that day), and I told her the person would have to come out after 4 in the afternoon because that's when Mia gets home from school. She seemed to blanch at that (I mean, they're a service company; you'd think their fixer dudes would be available until the evening because people do have school and jobs and such), so I offered to go downtown to the office on Friday (I couldn't make it on Thursday) just to get it done. When I picked Mia up at school on Wednesday the teacher said everyone was scared to move her chair, so I said she'd just stay home on Thursday. I called the office back and asked if they could send somebody out on Thursday, as she was going to be home from school anyway. Luckily, they had someone who could make it.

I wasn't home when he showed up the next day, but Krys was, and ... he didn't have the part to fix the caster wheel. He had a new tire, and he installed that, so that was taken care of, but I couldn't believe that he didn't have the part. She called me and told me that, I said he was not leaving without fixing the caster wheel, dang it! She must have given him the evil eye, because he skedaddled out to his van and found a bolt (it's a hard bolt to find - it's very long, which seems unusual, so I wouldn't be surprised if their guys didn't have them lying around), even if it's not the exact one. He said he'd order an actual bolt that's supposed to go there, and all was well in the world. I couldn't figure it out - the original dude said he was going to order new caster wheels, and when I called on Wednesday, they said the parts were in. So what happened? The only thing I can think of is that when I called on Wednesday, I didn't tell them that the bolt had broken, and they ordered only the caster wheels. See the picture above? Doesn't it look like that entire black housing that's bolted to the main frame should be the "caster wheel part"? I wonder if they only got the wheel part of it, which seems insane. But that's the only thing I can think of. But that would be insane, wouldn't it?

So Mia's wheelchair is all groovy again, although I have to call them next week and ask if they're getting the "real" bolt in at some point. But it took a lot longer than I thought it should, and it's just some of the bureaucracy that we have to deal with fairly regularly. Just this week, the court finally approved her accounting from 2015, so they were able to release the funds that she needs to pay for stuff. This wouldn't be a big deal except, of course, that some things she gets are fairly expensive and every year about this time, her funds run really low and every year the court gets later and later in approving the new year's budget. It's just the wheels of justice grinding slowly, but it's still annoying, because we have to ask vendors for a bit of time to pay bills, and that's never a good thing. They're always understanding, but that doesn't mean it's not annoying. I turned in the receipts and bank statements from last year in March, I think, so you get an idea of how long it takes for the court to go over things. Part of it's my fault, of course - I could get the accounting stuff in by the end of January, probably, and I think I'll be able to do that this year, but the court still takes forever to go over it. I've been doing this for over a decade - don't you think if I was going to spend Mia's money on jet skis for me and Krys, I'd have done it by now? I get why they do it - probably one person embezzled their kid's money once, and everyone freaked out - but they could do it a bit faster!

These are just some of the things we deal with on a semi-regular basis. Everything, of course, is predicated on the fact that we're glad that our daughter isn't, you know, dead, but it's still frustrating when you have a kid with so many challenges, both physically and mentally, and the support system around her creaks a lot when you put the tiniest bit of stress on it. We appreciate her therapists, her doctors, and even her wheelchair company, but man, sometimes the little things get to you almost more than the big picture. And that's kind of a bummer.