Fate, hope, and a breath of fresh air

Where do we go from here? This was a question that would plague me for weeks. While we were at her pediatrician’s office during the months between our two testing appointments, I had already begun to weigh my options and look for another practice. I asked O’s doctor if he knew anyone else that we could see to finish up the testing. He shook his head, unaware of other specialists in the area that dealt with this type of diagnosis. His basic answer for all of my questions was simply, “you could get a second opinion.”

Second opinion… to me those words seem dirty and shameful. It’s not a second opinion I’m after. I’m just looking for a practice that is able to work with the needs of my family. I don’t disagree with the diagnosis or the treatment, we need flexibility and we deserve compassion.

After our initial testing was complete, I had resigned myself to see what this man had to say. I pleaded with my husband to move hell and earth to make it to that appointment for the final diagnosis and treatment plan. I wanted to make this work despite the effort I was going to have to put in to it, whether it was to miss school or work, beg for favors, whatever. I will do whatever it takes to help O.

That’s when it all started to come together. Divine intervention. We are fortunate enough to live in a neighborhood with a community swimming pool. It was a nice hot summer day when it seemed like most of the adults in the neighborhood played hooky from work in order to hang out at the pool. I was talking about the problems we were having with a new friend when she told me she knew at least two different people who had children in vision therapy. They just happened to be there that particular hot sunny day, and I was introduced to both of them.

The first parent was talking about it nonchalantly, like it was just a thing. Her child had been enrolled in vision therapy for “something or other, I can’t remember” (exact words) for a short period of eight weeks. Then she told me “ but he never practices his therapy.” I was baffled. Knowing what I know about the cost, why in the world would you just waste money and more importantly time? Would it work if you don’t practice at home? Could I just learn the exercises and do it without having to go to the office every week?

The second parent told me of their experience and it was quite similar, except her child was in therapy for 16 weeks. My first question was, where is this practice and how do you sign me up? My second question was, “could that mean we could have a shorter experience than 42 weeks? This sounds too good to be true. The burning question really was, both of these kids are older, could this practice actually treat my younger child?

This is how we found Eastern Virginia Eye Associates. When I went in for my annual eye appointment, I asked my optometrist about what they knew about their program, which was very little. I am amazed how little is known on this particular subject and how few health professionals know about this specialty.

We decided to do our own homework then. My husband Andy made the first contact. He was directed to Amanda who was able to answer some of our questions. Andy called me excited and suggested that I talk to Amanda myself. He seemed very optimistic that this could be the place to receive help. He briefed me on the synopsis of his conversation. First, the timeline of therapy was extremely different than what I expected. For O’s particular diagnosis, she would have to participate in 52 (not 42) weeks of therapy. O can receive an unlimited amount of therapy per week in the office as she needs it. This is evidenced by how well she is keeping up with the exercises at home. Sick days and family vacations are built into the program so she doesn’t miss out on treatment. Most importantly, they are willing to work with our insane schedules. She was willing to leave teh Thursday evening time slots available for us in the event I could not find an appropriate tim eduringthe week after school. that would make it easy for Andy to pick both of the kids up from daycare and take her to therapy. An evening appointment! This was the answer to all of our problems!

I couldn’t believe it. Andy suggested I call and speak to Amanda myself. Amanda gave so much of her time to me that day. We spoke for almost forty-five minutes and she answered every question with the utmost care and professionalism. She seemed to really care about what we were going through. She listened to me talk about O’s idiosyncrasies and started to develop strategies to integrate vision therapy into our lives. Her upbeat personality made me feel confident that we had found the right answer.

The best part? We can start in two weeks!! First we had meet with Dr. Ramos and have another consultation. We had to get the records from “the other guy” so she could have all of the necessary testing results. Unfortunately we had to repeat the first part of the testing. Although Dr. Ramos has worked with that other doctor, she can’t make a treatment plan based off of someone else’s diagnosis. This is technically the “second opinion” that I need to get in order to start working with this practice. After our initial consultation with Dr Ramos we can actually begin vision therapy! Unlike the “other guy,” we don’t have to wait for someone to graduate out of the program in order to start making progress. Amanda put us on the schedule that day.

So, we did it. We found our practice. The practice just happens to be five minutes from our house, five minutes from O’s school, five minutes from O’s daycare. From any point in the surrounding area of our home, it’s five minutes away. We never made it to that appointment with “the other guy” to get his final diagnosis. I wasn’t going to waste another minute.

#becausewereadwithourears

#visualperceptualdelay

#visioneer

It all went downhill from there...

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.

#visioneer

#visualpercetualdelay

#becausewereadwithourears

The good,the bad, and you decide from there....

What is a developmental optometrist? I had this very same question but with my experience in the medical field, more specifically pediatrics, emerging science shows that kids need their own doctors who specializes in their unique needs. As a former pediatric nurse, I would always cringe when people would term children as “little adults.” This is simply not so. They have a vast array of different disease processes and different etiologies than adults. A majority of their diagnoses stems from congenital defects or variations during development. Some of these variations in development can lead to lifelong problems that require treatment well into adulthood if not detected early. A developmental optometrist is an optometrist trained to treat individuals with developmental or functional vision related problems. Their training extends well beyond a regular optometrist who detects and treats eye disease, examines binocular vision and convergence, and uses refractory to prescribe corrective lenses.

I am telling you this because this is the type of doctor we were referred to. I was told that there would be two individual testing sessions, each several hours a piece. I was forewarned about the cost of the testing and initially I balked at it. After taking a deep breath, I quickly realized O is worth it. Literacy is worth the price.

We had to wait a month to get in for the initial testing. During that time frame, we continued with the child study evaluation for special education. O was approved and labeled with a specified learning disability. This means she doesn't have an organic cause to her learning difficulties (such as a medical diagnosis). They determined it's simply due to her IQ afer testing. In other words, they have determined after a test that she's not smart. I was able to finally breathe a sigh of relief that she qualified, but inside my head I had no clue what lay ahead. There were still a number of questions I had because I didn’t know what would happen after the vision testing.

That was of course until I was randomly taking care of a patient who I happened to overhear her talking to her son about his vision therapy. I immediately took that opportunity to get more information from a parent’s perspective. I listened to her explain her story and she started talking about 42 weeks of therapy. She raved about the doctor and how amazing he is at what he does. I was grateful to hear the doctor was highly recommended but I also started to get nervous because that simply couldn’t happen to our family. There was no way our busy lives could accommodate that kind of lifestyle. I found myself praying that our lives wouldn’t be affected in that way and thereapy would be different for OUR child.

We finally had our appointment and I was quite impressed by the specialist. There were photos of what seemed like hundreds of smiling kids wearing cap and gowns adorning his walls. I interpreted that as many children have graduated his program and are doing well. He quietly acknowledged me and went over to greet O where she was playing. She was in a corner playing with a dollhouse so he picked up a doll and played with her. We went back into his office and began to talk about O’s symptoms and her struggles with reading and writing. He conducted a battery of tests over several hours to evaluate convergence, accommodation, depth perception, visual acuity, and tracking, just to name a few. He used prisms and an archaic computer program to evaluate how O moves her eyes when she is reading and qualntatively indicates what she is actually seeing in her visual field. He explained every test in great detail so I would be informed. Hind-sight being 20/20 (pun intended) I wish I would’ve taken more thorough notes so I could explain in better detail what how he determined his diagnosis. I can affirm that he did this in a systematic, detail-oriented manner that was age appropriate for my then six-year old.

First, the good news. We have a solid diagnosis. Actually we have a few. O has a visual perceptual delay related to several disturbances in her visual field. Her first original diagnosis by her regular optometrist was confirmed, amblyopia. She also has problems relating to binocular dysfunction, saccades (tracking smoothly when reading word to word), depth perception, and accommodative dysfunctions to name a few. Well, no wonder why she can’t read. She doesn’t know what she’s reading.

Amblyopia is also known as lazy eye. Some people think that lazy eye is a simple drooping of the eye lid or a weakened eye. They are half right. Amblyopia can be severe and irreversible if not treated. In the simplest of terms of how it was explained to me, think of the eyes as siblings and the brain is the parent. The good eye is the more dominant bully eye always seeking attention from the mother. The bully eye never lets the less dominant, or lazy eye get any attention. The bully eye requires so much attention that the lazy eye simply gives up and no longer demands attention from the mom. After the lazy eye gives up, vision can be completely lost. It was determined O’s case of amblyopia was severe and was impacting all of the other deficits we discovered she had. Now this makes me wonder if her learning disability is in fact organic in nature because she is a smart kid.

Now the bad news, his next words came out his mouth impacted me as though I was handed down a jail sentence. She will require 42 weeks of therapy, at a cost that isn’t covered by private insurance. The cost is a hundred dollars a session once a week, but a discount is provided if you pay for the entire year up front. I was advised that conventional treatments for amblyopia in the "old days" providers would patch the good eye to force the bad eye to work. He told me that research has proven that patching the good is not permanent and it only temporarily reverses the problem.

At first I didn’t understand why it would take such a long time. I thought back to the pictures of the smiling kids wearing caps and gowns on his walls. Were they all success stories? Did everyone have to go through 42 weeks of therapy? What is it specifically about the number 42 anyways? Is it a magical number? Why does it take so long? Is this real medicine or is he simply trying to part me with my money? More importantly, why is this happening to O? How do we do this? These are questions that I would have to wait months to get answered.

I left the office feeling bewildered and overwhelmed.As I was checking out the office staff told me they would call me when the next appointment for testing would be available. I was then informed vision therapy would have to be the same day of the week, same time slot every week to accommodate the office schedule and provide continuity of care. It was as though the panic rose in my throat and wanted to start screaming, but I held it back. The only thing I could think of was, I am a nurse and my work schedule is so erratic, how in the world am I going to accomodate this requirement to help my daughter? My mind started reeling as though I was going to figure it out at that moment. That is when the secretary told me square in my face, “you can patch it, it’s better than doing nothing.” What was it the doctor just told me about patching? Was this good advice if I decide not to do this?

Oh boy, here we go…. If you know me you are probably stifling a laugh because I think mama bear just entered the room.