I’ve had to really stop and think about how I was going to write this entry because there are some (ok a lot) negative undertones, but I have to be true to myself and just be blatantly honest about our journey. Writing this part of our story is just as difficult as living it. We did not start off on the right foot.
I am normally a go with the flow kind of person. I get anxious with confrontation and I try not to complain, but when it comes to my children, I am their only advocate and I have to be the person I don’t want to be. I’m not overbearing or one of “those moms” that people would describe as they roll their eyes. My actions (and inaction) will set the tone on how my kids handle their own relationships and decisions later on in life. This is not going to be a positive post, but it is honest. It’s raw and it has shaped how we got to where we are now.
After our initial appointment, I originally decided that we were going to skip the next part of testing and completely ignore the doctor’s advice. I wanted to give up before it even started. It seemed too hard especially the part about trying to figure out how to get her to her appointments and keep up with that kind of lifestyle at home. I wanted to ignore everything, but as a nurse that would be stupid, as a mom that would be completely ignoramus.
I am a registered nurse who switched jobs from being a nurse educator working 60-70 hours a week to being a full time surgical recovery nurse at a local hospital working 40 hours a week. I made this change in my career to help O out more at home and be more present for both of my kids. When we received this diagnosis, I was only at this job less than six months. I decided to make further changes to help accommodate her therapy in the clinic as well as home therapy. First I decided to go flexi status, which means I would give them my availabilities and then they would tell me if I could actually work. This would satisfy the same time slot, same day of the week criteria. However, I would not be guaranteed to work. That is problem number one.
I decided after a lot of soul searching and conversations with my husband Andy and naturally Human Resources, to go part time. That would still let me satisfy my desire to have a career in nursing and juggle it with the demands of being a mom of two small children. Decreasing my hours to part time does not guarantee being off on the same day each week, because it’s not fair to my colleagues. It does guarantee that I would be able to take her to her appointments and help out with therapy and various other evening tasks. I thought I was being proactive by doing this before the next appointment, but I was so very wrong.
We had to wait another month for the second part of testing. The specialist was in the process of moving offices so in the interim I took O to her pediatrician for her annual well visit. I came armed with the initial paperwork from the child study evaluation and the basic documentation outlining her new diagnosis. Her appointment took much longer than a normal one as we leafed through the various documents. I remember as I was talking, I saw him out of the corner of my eye furiously trying to type as swiftly as I was talking. I took the stack of documents and told him he was more than welcome to make a photocopy of them so he can reference later. I wanted to ask him if a visual perception delay was even on his differential early on. Her original optometrist told me these types of delays can affect everything including speech, reading, writing, confidence, and motor skills. These are the all of the things that are affecting O, so why is this diagnosis so hard to catch? Does it have anything to do with limited studies on the subject? Or all of the symptoms so similar to ADD, autism, or other learning disabilities that it’s easier to label it otherwise?
I digress. We had our appointment in the afternoon. The first study they wanted her fresh, but for this part of the testing they wanted her to be tired. We had enrolled her in summer school so that wasn’t a problem (that’s another story, for another day). We went in with an open mind, open heart, eager with anticipation. While we were waiting I was chatting with a parent in the waiting area. For the first time during this endeavor I had hope. She told me how she was in week 10 of 42 (there’s that number again) and she had already seen dramatic improvement in her child’s abilities. I went into this part of the testing thinking everything would be okay until it wasn’t.
We were introduced to a person (other than the doctor) who would be administering the test. During the test, they did a lot of handwriting samples. First O had to copy sentences from a passage written on a piece of paper during a specified time frame. During this test she barely wrote seven words down. They looked at the characteristics of her handwriting, her pencil grip, the presence of reversals, how long it took her, how much she was able to copy, and certain behaviors while writing. Then they had her draw lines and shapes. The idea was to see how long se could use the pencil before she lifted it off of the paper, the accuracy and straightness of the line, etc. Then she had to compare shapes to each other that were similar. There was also an exercise that evaluated shapes for depth perception. It was very detailed and very lengthy. But she did it.
So far everything was going great. I was very impressed by the detail and even methods they employed to determine a diagnosis. Everything was fine.
The lady who administered the test then told me it would be at least another month before the doctor can sit down and go over the full diagnosis. It’s already been two months, but who is counting? I mean other than me? She then proceeded to tell me that he will not be able to see me unless my husband is present, because the entire family needs to be on board with treatment. I proceeded to tell her that might be difficult because my husband is in the medical field and his schedule is more complicated than mine. I even told her I was a nurse and quite capable of handling that decision on my own. I mean if you want credentials I have a masters degree but I wasn’t going to be that snarky. She then thrust a copy of “What Happens When Your Child Struggles” in my face and told me I should read this to really grasp the severity of O’s condition. She told me if I wanted to be a “good parent” then I would figure out how to get him there.
This is the exact moment that mama bear came into the room. I never thought I could be outwardly this angry with another professional. I then proceeded to tell her about my work schedule. She asked me if there was any way that I could “convince my boss” to let me off the same day, same time slot every week. I explained to her calmly about how things work in a hospital. I told her that I could make an effort if it was only for six weeks, but they are asking for 42 weeks.
She then educated me about the importance of continuity of care. Me, a nurse of thirteen years. Continuity of care is important because the health professional can develop a relationship of mutual respect with the patient to promote improved outcomes, increased satisfaction, and cost effective health care. I’m not mad because she tried to justify it with sound medical research, I’m mad because she told me I’m a bad parent because I can’t adjust my life to her standards.
She asked me if I had a babysitter or a neighbor who could help get O to her appointments. First of all, even if I did, I am not going to ask someone else to take care of my responsibilities. I would never impose on someone like that. Then she asked if my mother could. I told her my mother had passed away so unless I could call heaven and ask for her back then no… (I may have overstepped a little on that one, but one should never assume a person has a regular support system). In addition, professionals (term used loosely here) should never treat people this way.
Then the doctor came out and he had the same helpful (insert sarcasm) suggestions to get her to the appointments. I asked him why his office wouldn’t be flexible to help us and he merely said that maybe his office staff could work something out. I then asked him if I should quit my job. He replied that it wouldn’t be “practical.” Let’s talk about practical for a second. His “helpful” office manager wanted to squeeze O in every two weeks (prolonging therapy to 84 weeks) on a Monday morning at 9AM during school hours. She is already struggling enough in school, why do we want to make it harder for her? I honestly don’t want to be hounded by the school for tardiness and absenteeism, so where is the middle here? Where do we meet?
As the doctor was finishing up with the last details of the testing, I told him my concerns with his office manager. I told him what she had said about her advising me to patch O’s good eye and he blatantly told me he didn’t believe me. It’s as though I have nothing better to do than make up a fictional story when all I want to do is get help. He told me that she would never say that. When he confronter her, she adamantly swore she didn’t say that. So now I am a liar.
We have the next appointment to hear the actual findings of the testing, but it won’t be for another month. Another month of patience, meaning another month of struggling. We have nowhere else to go and we spent all of our money on this testing. I couldn’t shake this off the entire evening. I was so angry, I was shaking. I cried about this for the remainder of the day. I am not a crier.
It’s clear that this office doesn’t practice a major core value of health care. Family centered care.
Our next step, I am not sure.