I was not born an advocate.

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As a person who is naturally hesitant to call people out or stand up for myself (often because I don’t think of the words until long after the situation has passed), I have had to grow into the role of advocate for my kids, especially Kyle. Slowly, through key situations, I have found my voice as defender.

When Kyle was four months old, he went to the eye doctor for some eye tracking and muscle problems. The doctor seemed knowledgeable about Down syndrome, and told me that new research (including some of his own) indicates that 80% of kids with Down syndrome have an eye muscle problem that can be improved greatly with glasses.

At the end of the exam, the doctor told me that he would like to give Kyle an eye ultrasound to measure his eye muscle. He mentioned that this could indicate the extent of his muscle problems. If the muscle was small, then it would need to grow for Kyle to have improvement in sight. If the muscle was the correct size, then it might not be functioning correctly.

We went in a little exam room with an eye ultrasound machine. The ultrasound tech seemed hesitant and questioned the procedure on such a small baby. I lay on the exam table on my back and held Kyle on my torso. Back in the first clubfoot post, I mentioned how strong Kyle could be, especially when upset. He didn’t want to lie flat on his back on me, and began to squirm. He was wearing his clubfoot bar, so I had to hold the bar to keep his feet still, and use my other arm across Kyle to keep his upper body still. This wasn’t enough, so they brought in a second person to help hold him. When the ultrasound tech was struggling to get any good images, the eye doctor decided to step in.

While Kyle squirmed and started to scream, the eye doctor pulled out a metal clip to hold his eyelid open, and proceeded to do the eye ultrasound through Kyle’s cries and struggles. I never thought to say, “ENOUGH!” Near tears, I allowed the doctor to complete the ultrasound. I have grown up with the idea that doctors are in a position of authority, and I have rarely questioned it.

first glasses
After we got his first pair of glasses, we had a tough time keeping them on, especially after he learned to pull them off. So at our follow-up two months later, the doctor prescribed atropine ointment to dilate Kyle’s eyes continuously for a month. Supposedly this would help because he would only be able to see with the glasses on. Do you know how it feels to have your eyes dilated? Bright light feels excruciating. When I asked the doctor if Kyle would be sensitive to the sun and what we should do about it, he said, “It’s December, so it’s not like you’ll be going to the beach. He’ll close his eyes.” That should have been my first red flag.

From the way the ultrasound procedure was presented to me, even after how traumatic the process was, I believed it was in Kyle’s best interest, and would give the doctor key information for Kyle’s treatment. So when at the follow-up, I eagerly awaited the doctor’s assessment of the ultrasound results. When he hadn’t mentioned it by the end of the appointment, I asked about it. He said that he had measured Kyle’s eye muscle. I asked, “Okay, but how does the measurement compare to other children his age? Do you know if his muscle is small?” The doctor’s reply: “I scoured all of the sources, and there is no data out there for a baby that young. I don’t have anything to compare his to. But the more children we measure, eventually there will be enough data.” Ummmm, you did this procedure without first knowing if there was any data out there to compare his to?

I got the distinct impression that this doctor was using my son as a guinea pig for the benefit of his own research. And that was most decidedly not okay.

We went to the pediatrician’s office a few days later, and I described to her everything that had happened at the eye clinic. Her jaw dropped. She said it reminded her of A Clockwork Orange. She said if he was doing it for research, there were all sorts of rules he was breaking. And most of all she said that what he did was wrong, and that she strongly recommended I contact Patient Relations.

As I am sure you can guess, after talking to Patient Relations extensively, over a month later I got a pseudo-apology letter. In it, the doctor stated that he was not using Kyle for research, and that he had believed that the ultrasound was necessary. Effectively, he may have received a slap on the wrist, if that. I did not feel redeemed, but I learned an important lesson: if it doesn’t feel right, you don’t have to do it.

I wish I could say that was the only time I have talked to Patient Relations. A few years went by, and I found out I was pregnant with our fourth child. I was at a developmental pediatrician’s office, again holding a squirmy Kyle on my lap. When I told her I was pregnant, she immediately asked, “You got the testing done, right?” I said, “Not yet… I don’t know if I want to.” She looked at me for a second, then said, “You don’t need another child with special needs.”

My answer was, “Well actually, we have thought about adopting another kid with Down syndrome, so…” I trailed off. She raised her eyebrows.

Her comment was problematic on so many levels. First and most egregious, was she making an assumption that if I did find out my child could potentially have special needs, that I would get rid of it? I would never abort my own child, no matter what special needs any tests would indicate. Second, did she perceive that I was having problems handling all the special needs my current children have? Do I have a threshold of how many special needs I can cope with?

Of course, at the time, none of these questions entered my mind. In fact, I mulled over the conversation all day until my husband got home from work. I told him what happened, and asked, “Am I overreacting thinking this was out of line?” This time he was the one whose jaw dropped. And he assured me I was justified in feeling wronged by her comments.

So once again I found myself talking to Patient Relations. The apology letter was even worse in this case… she stated that she did not intend any ill will, and she was sorry that I misinterpreted her intent.

These two extreme scenarios have given me confidence to stand up for myself in other situations. I still don’t always think of the words in time, but once in a while I surprise myself.

Luckily, advocacy is more often a positive experience. My goal is for the people around Kyle to be comfortable in his presence. In writing this blog, sharing his pictures on facebook, publishing YouTube videos, and integrating him in his community, I strive not just to share the joy he has brought us, but to educate and familiarize. And if any of the people I reach someday face a diagnosis of special needs, I hope they will think of us and know they can do it too.

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About Katie

Katie Bee is the author of for Elysium blog: a site about family, Down syndrome, home, art, and writing.

4 thoughts on “I was not born an advocate.

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