Expressions of the Year

Earlier this year we all discussed at the dinner table what our mottos for 2014 would be. The H.J. has decided to retain his motto of 2013, “Suck it up!” My new motto is “Please do not make more work for me,” and I have already used that gem TO DEATH. Little Angel’s Special Ed Case Manager’s motto is “You’re welcome,” said in response to anything. She told me she’d come up with it when a parent yelled at her “Because of you we can’t have anything nice!” to which she replied “You’re welcome.” (The parent was clearly using her as an easy target, not because there is any verisimilitude in that statement.) I’ve also found myself readily adopting this one ….

I espied a friend sitting on the floor, sorting someone else’s catastrophic mess, and asked her “How’re you doing?” to which she sing-songed “Living the dream!” and we both guffawed and lady-snorted (yes, oxymoron). Relating this to another friend-ish (never be friends but we’re friendly) who volunteered she’s been using “Just worry about yourself” a fair bit this year.

Big Angel still hasn’t come up with his, or he did and it was something he’d heard on Vsauce or some other YouTube channel (bane of my existence) but he’s not using it, just thought it was racy enough to garner a response from us. He’s close to my last good nerve these days and in fact, when he gets home from school today, will be the recipient of a very forceful “DO NOT MAKE MORE WORK FOR ME!” from his mother (me). I have had it with a 9 1/2 year-old who will not do his chores unless specifically told and monitored whilst doing. Had it.

In January I started the process of getting a stair lift installed in our home for Little Angel: in January alone we had three falls, one with his father and two with me. The one with the H.J. necessitated a knee brace for the H.J., and one with me resulted in severe bruising on my back. All three falls were due to Little Angel’s inability to help / understand, and him flailing his body and throwing us, hard, off-balance. None of the falls resulted in any injuries to the Little Angel, which is good, but he’s getting bigger (which is a good thing) and carrying him up and down the stairs will not be getting any easier.

His Medicaid Case Manager (he has Medicaid as he is profoundly disabled and under 18 years of age), whose sole job description is to help the children get necessary and appropriate services. As the Little Angel is severely developmentally / cognitively disabled and has global aphasia, that means dealing with me. I spend an inordinate time managing his care and health, and this woman spends an inordinate amount of time throwing obstacles in my ways — probably in other parents’ ways as well, but I only know for certain how she is actively making more work for me. I am t-h-i-s close to no longer being able to work with her, which will be fine as I’ll just go up the ladder, complain (again) and request a different Case Manager (as I’ve done in the past). This gal is young, single, without children, so she has aucune idee how hard, how insanely time-consuming, how desperately personal this is for us involved parents. Grr.

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Hopefully this will soon earn the title of Before Stair.

I’m going to give just two (of many) examples: I secured three bids from three vendors for the proposed stair lift. We have a curved stair and curved stairs necessitate a custom stair lift; a custom stair lift means it’s more expensive. That’s the way it goes. That automatically narrowed the pool (of stair lift manufacturers) at which I could look, leaving five (Precision Stair Lifts, Stannah, Bruno, TKAccess, and Sterling); turns out one of them is not available in our state, which brought the pool to four. Because of Little Angel’s inability to tolerate low frequency sounds (like power tools, vacuums, electric toothbrushes, hairdryers, blenders, water running in tiled shower, etc.), I had to gauge the sounds of the stair lifts’ motors, and that ruled out one of them, leaving us with three. Luckily these three were able to meet the rest of what I had deemed the Little Angel Standard: three- or five-point harness, leg-restraint, two remote controls, chair’s armrest controls disabled, in addition to not having a low-frequency motor (all three are near-silent), and being able to make a curved stair lift.

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photo courtesy of Stannah showing five-point restraint / harness and leg restraint

These are not inexpensive: the least expensive bid we received was over US$16,000, and the highest was just under US$22,000. I’d collected LMNs (letters of medical necessity) from Little Angel’s sundry providers (physical and occupational therapists, general pediatrician. Special Ed Case Manager, plus a detailed letter from me [the Mother LMN and the mother of all LMNs], including multiple photos of the stair in question) in addition to the bids and presented them to the Medicaid Case Manager for her to present to the board. Her first response was to ask me why I hadn’t investigated any other options, so I asked her if she’d read the Mother LMN which starts with the fact that our floorplan lends itself to neither moving the Little Angel to the ground floor nor an elevator. She then wondered why we hadn’t thought of hiring someone to carry him up and down the stairs. I think she’s an idiot, and to prove this I asked her “are you suggesting we have someone here 24/7 at Little Angel’s beck and call, one for whom we would be limitlessly indemnified against injury and who can 100% guarantee they will never, ever hurt / harm the Little Angel?”

She couldn’t answer it. Idiot.

She elaborated that she’d had “a client who just last week had a curved stair lift installed for US$13,000.” I immediately peppered her with questions: “Is the stair exactly the same shape as ours? Who is the manufacturer? Who is the vendor? Does it have torso / leg restraints? Does it have two remote controls? Is the armrest’s control disabled? Is it near-silent?” She chose to answer none of my queries and went on blabbing about something else. I was like a dog with a bone and wouldn’t relent, resorting to yelling these questions at her over and over. Finally, with an exasperated huff, she said “It was a hypothetical.”

Are you fucking kidding me? Which was it: she has a client who’d just had a custom curved stair lift installed last week (which does not sound like a hypothetical to me) or she’d pulled that number out of the air?

Then I was in a huff and before ending our conversation I firmly and loudly said to her “Do NOT make more work for me!”

La vita e bella. I love chocolate. More mottos.

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