As the Little Angel’s mother, I really need the professionals in our lives to do their jobs, do them fully, and do them correctly. Repeatedly I feel let down by them, and I just don’t know what to do. I so rarely have these feelings in regards to the Big Angel, perhaps because his isn’t an undiscovered world where I am having a hard time figuring out the language.
Little Angel is on a Medicaid Waiver: that means that due to his disabilities he is entitled to our state’s Medicaid (health insurance) plan. Because of his high level of Needs, that also means that he needs to have a Skilled Care Provider, and the state prefers that to be a parent. Me, in this case. Earlier this year when this was established it was like pulling teeth with his Medicaid Case Manager, a lovely human being but equally ignorant, to figure out how to go about it.
We did it, in large part (in the large part) because of insurance / disabled advocacy agencies to whom I reached out for help.
Well, now it is time for Little Angel to transition to the Waiver geared for children with severe needs, and as he does that my job description and fund source will also change. I knew that, so July 26 I started asking all the “professionals” how to ensure a smooth, easy transition without loss of revenue. In November when I learned the actual date of Little Angel’s transfer I again asked the multiple “professionals” about it. His new Medicaid Case Manager knew less than I, so asked that her supervisor attend the meeting for us to discuss.
Well, this morning it’s all come to a head and I am both furious and so disappointed — I can feel it tight in my belly — with all these “professionals.” For whatever reason not only did the left not know what the right was doing but the left wasn’t even aware it was supposed to do something, anything. I can (and am) document(ing) every single time I asked for guidance.
But who will pay the ultimate price for their fuck-ups? Little Angel and me. Of course! Why not? We, who are blameless, who did nothing wrong in this scenario, will be the ones to suffer the consequence(s), and they will be costly.
Some nitwit self-involved vapid mother at Big Angel’s school was really needling me about becoming a crossing guard. The answer was an immediate and unequivocal “NO.” She kept going and I refused to further answer: I answered once and no means no. But when she wouldn’t relent I finally fixed her with “when you take over ALL tasks for Little Angel — not Big Angel, just Little Angel, then and only then will I consider being a crossing guard.”
She got uppity with me so I said “I’m not the one with the problem here, lady.”
Being a parent is a wonderful and wonderfully time-consuming ordeal. I’m so blessed to get to do this and I wouldn’t trade it for the world. Any of it. However all the shit which accompanies having a profoundly disabled medically fragile medically not understood child completely obliterates any stress from the “regular” parenting. Spending hours this morning on this one issue which should have been taken care of when I first asked July 26. Spending months getting Little Angel’s medically necessary wheelchair. Spending months (still ongoing) getting Little Angel’s medically necessary hospital bed. We are (ha! I am) also in the throes of investigating and beginning a study of a new and potentially exciting med for Little Angel: I’d planned on using this morning to determine titration / dosage schedule for him. Actually, over the weekend the HJ and I’d decided that we’d set aside an hour to work on it together this a.m. after we got children off to their respective schools. Forgoing breakfast, I got everything set up in the den only to have the HJ pop up after a few minutes to say he would leave it up to me and to “fill [him] in.” He was bored. Yeah, me too, but so the fuck what? This is our child, after all.
It is my understanding from the parents of severely disabled children, esp those of us whose children are truly uncommon (and not those who say their child’s condition is “rare” — if it can be diagnosed, if it’s got an insurance code, if it’s got an international fundraiser, a website, a 501(c)3 then sorry, not that rare!) and not able to be helped / understood by current medicine / science, that we feel as if we are constantly having to invent a wheel. We don’t have an inkling in what shape that wheel ought be — we are that clueless, that on our own, that in the dark. Because there is so much we have to do we really depend upon those whose jobs are to help us to do precisely that: help. So when they not only don’t help but make it harder, it is that much more frustrating, that much more of a letdown.