In my research and writing I define “It” as this very challenging, yet transformative thing we parents of special needs children live. We say over and over in commiseration, “They just don’t get it!”
And in solidarity, we will talk about how “getting it” means we know something you don’t, that we have been chosen and transformed by our children. So, our “It” can be said in hopelessness and with hopefulness. Depends on the day and the context. But, we who live this life, do get “It.” And sometimes that “It” sucks and sometimes it rocks.
The game “Say ‘Uncle’!” requires your opponent to submit or give up. Crying out for mercy, it tells our opponent that he has won the match.
The origin is from the Roman empire. When Roman children were bullied, they could surrender by saying the Latin phrase, "Patrue, mi Patruissimo," or, "Uncle, my best Uncle.” It was shouted out as a sign of respect for the dominant and revered patriarchal societal order who was typically the bully.
I remember playing this game in school. We would pull and hold our arms behind each other’s back, timing our stronghold, and whoever couldn’t take the discomfort would shout “Uncle!” The winner was the one who could be held in that position the longest. Senseless game, but seemed to dominate on the playgrounds.
After 11 years and thousands of hours clocked in with hospital, clinical, and conferences with doctors and surgeons, nurses, therapists, orthotists, and teachers, I finally lost it. I called one of Will’s doctor’s nurses the B-word, yep, I told her she was a Bitch.
No, this is not characteristic for me. And no, I’m not proud of it. But, I’m human. Let me tell you the story of how it happened.
I am the one who takes the lead in communication with Will’s team. Jim is there, but I do most of the talking. I actually call him in to play bad cop when I need him. He’s good at that. 23 years of Infantry combat arms training in the Army and over 20 years in construction and in education, he has a look and demeanor about him that can shut anyone up and down.
But, I have learned over the years that 1) most of the people who serve kids with special needs are good people with good intentions and 2) I can explain and convince them better if I appeal to their sense of ethics and play upon their empathy.
There is no “What to Expect When You are Expecting” handbook for “What to Do When You Have to Navigate the Social, Medical, and Educational Systems When You Find out Your Kid Has Special Needs.” So, this is my way and it has been successful in helping us give and do the best for Will.
But, faced with an upcoming, difficult, and rarely performed surgery where many in the medical community remained divided on the whether the outcomes of the surgery are worth the cost worry, a work schedule this semester that is kicking my butt because of extra travel, and an injured shoulder that is preventing me from my outlet of competitive powerlifting, and the always present lack of sleep, I lost it.
Jim had to take Will solo to a doctor who is a naysayer of the surgery. Armed with directions and questions, I sent him out the door with a nurse’s help, while I drove to campus to teach (ironically) the rhetorical appeals one can make when crafting a write for change media composition.
The appointment didn’t go well. In the hallway, not a patient room, the nurse suggested that Will had lost too much weight and that we should be concerned. My husband explained that Will hadn’t lost weight and that she must have weighed him wrong. “He’s never weighed 80 lbs. We have him weighed at every appointment. You must have written the weight down wrong at the last appointment.”
“That’s not possible,” she said. “If you aren’t concerned, I will let the doctor know because she will be concerned and we may have to report this.”
“Go ahead. I’m not concerned,” said Jim with his “bring it because I know I’m right” stoic Army face.
The appointment then moved into a patient room where the doctor refused to discuss the surgery because she was now convinced that the other doctor was right. This after a year of her arguing against it. And she refused to explain why the sudden change of opinion. And she refused to consider the orthotist and Will’s two physical therapists recommendations for bracing, the people who have their hands on him and work with him weekly.
Jim called me at the end of the appointment very upset. Now, I don’t know if it was the combination of “don’t mess with my boy and don’t mess with my man,” Loretta Lynn, Tammy Wynette kind of thing that took over, but I lost it. I called the nurse and pointed out her clear violation of HIPPA and suggested she look over the other specialist’s weight checks which she has on file because everyone on Will’s team copies each other. I proceeded to logically lay out my argument against the bracing system the doctor was recommending. And finally, I reminded her of the presentation I had heard the doctor give clearly outlining her disapproval of the surgery. In fact, I still had the Powerpoint slide show handouts. I could send them to her to remind her.
With an irritated, I don’t have time for this on a Friday afternoon condescending voice she suggested, “Mrs. Jones, I really think you are over reacting,”
Gritting through my teeth, I pulled out the “It’s Dr. Jones actually…”
“Well, Dr. Jones, we have been treating patients like your son for a long time and…”
And then I suddenly had a Fried Green Tomatoes Towanda moment and after 11 years of calculating every word and action when it comes to Will, I just cut her off with this exasperated loud “What a bitch!” and hung up.
Caregiving is rewarding, but when it’s your child and they are growing bigger and weaker and you are growing older and your patience is growing thinner and you have to juggle money, work, and a home life, it’s often harder than it is rewarding.
I called the office manager the next day and apologized and explained what led up to my outburst. She was very kind, even letting me know I wasn’t alone or the first one to have this reaction. She did suggest that the doctor and her nurse weren’t used to dealing with parents like my husband and I. They weren’t used to being questioned. All the more reason I told her that they should invite questions and remain empathic. I want the families who have limited resources to have MORE of those invitations to question than my husband and I who live with financial and educational resources. We agreed we would transfer to another doctor’s service and that this doctor and her nurse would go through some family and disability awareness training.
I wanted to tell this manager what I tell you here and now. “What a bitch” was really a cry for mercy, “UNCLE!”
Uncle, damn it, uncle. You win. I need a break. Will needs a break. We need a break. We need you to get IT. We need your help, not another challenge to overcome.
When I called my friend who has a child with special needs, after first bursting out laughing because she got IT, she said, “I’m actually surprised you didn’t tell her to go Go fuck Herself. I think you showed real restraint.”