Micro-Preemies

I just finished reading Juniper: The Girl Who Was Born Too Soon. It was a memoir written a couple about the birth of their premature daughter, Juniper, at 23 weeks gestation. As I read through the pages, I could relate so closely to the stories of my own birth and 6 months stay in the NICU that my parents shared with me. From the nights of almost losing me and my Dad spending countless hours reading to me and the dedication and care that the nurses and doctors gave me or my Mom’s dedication to making sure I had her breast milk to eat. I am thankful to the authors for being willing to share their story. I am amazed at the strong willed nature of those born too soon like myself and Juniper.

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Thinking back on the stories of my early birth and stay in the NICU I am reminded of the amazing opportunity I had in 2009 when I got to participate in the NICU Reunion at Minnesota Children’s Hospital. It was amazing to be surrounded by so many strong and talented people who share a similar story to myself. I was thankful for my ability to give back by participating in their 20 year follow up study on the outcomes of micro-preemies like myself. Again in 2014, I had the opportunity to observe Dr. Ronald Hoekstra and nurse Lois Gilmore in the NICU Follow Up Clinic at Minnesota Children’s Hospital and I even got to read through my chart from when I was in the NICU and went through the follow up clinic. It was amazing to see that. I am so thankful to all of the doctor’s and nurses that cared for me and supported my family.

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Growing up, I was always reluctant and embarrassed to share about my prematurity and I didn’t want to share about my story as I didn’t want to be seen as different than others. I soon came to realize that my prematurity, vision impairment, and all that comes with it is just part of who I am and it is my story. I am now proud to share my story and about my struggles and adaptations that I have had to make in my life. I would not be who I am today without living this life. I truly feel that in order to survive what I did, I had to have the tenacity and “me do it”attitude that helped me through it. These personality traits have stuck with me and contribute to my drive to go after my dreams. I am so thankful that my parent’s supported me and never held me back from pursing what I wanted to pursue because I coudn’t see as well as others. I am lucky that my vision is my only remaining complication of my prematurity and that I got to take advantage of the early lung studies that were happening at that time.

I was born at 25 weeks gestation, weighing 1 lb, 6 ounces and I was 12″ long. My head was the exact size of a tennis ball and I could wear my Dad’s wedding ring as a bracelet.

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During my OT internship at Minnesota Children’s Hospital in 2014, they wrote a blog story about me describing my NICU stay and return to Children’s for the internship. You can read the story by clicking here

When I lived in Tacoma, WA, I volunteered in the NICU, rocking babies. I really miss this opportunity since I moved back to Portland, OR. I felt as though baby rocking in the NICU was my one way of giving back… of silently sharing my story.

I have always wanted to work as an OT in the NICU, but I know this is a very difficult setting to get into. Maybe at some point in my career… I do have a long career ahead of me. I want to find a way to share my story with others to provide just a little bit of hope to the parents going through so much with their little one. To say, it can turn out okay in the end.

Another book I really enjoyed reading was Before Their Time: Lessons in Living from Those Born Too Soon by Daniel Taylor and Ronald Hoekstra. This book had special meaning to me as Dr. Hoekstra was the one who was on call at the hospital the night I almost died.

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To all the parents out there who have faced a stay in the NICU due to the premature birth of their child, my thoughts are with you and may you hear my story and gain a little hope that your child too will make it.

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You Never Know Until You Ask

I read an article yesterday about a blind engineer who works for Apple. She was born prematurely and has been blind since birth due to her prematurity (my guess is that she has ROP). In the article she stated, “You aren’t going to know unless you try. You aren’t going to know unless you talk to them … so go.” This resonated with me as it remind me a lot of myself. There have been so many times in my life where I have reached out to others to investigate something I wanted to do, not knowing the answer. Whether this was completing my OT fieldwork at Minnesota Children’s Hospital where I spent many months in the NICU, working as Dr. Temple Grandin’s teaching assistant for the school year, or being accepted for Guide Dog training. You don’t know until you ask and you will never know if you don’t ask. The most they can say is no, but at least you took the leap and found out.

You can check out the article here: http://mashable.com/2016/07/10/apple-innovation-blind-engineer/#W7PbKGCXEOqq

The article inspired me to think about where I am at with my occupational therapy career. Don’t get me wrong, there are aspects of my school OT job that I like, but there are aspects that are challenging and are not ideal for me. I have been thinking about where I want to go with my career. I have so many interests in the field – NICU, animal-assisted therapy, low vision, pediatrics, guide dogs…

I have recently started to explore a specialty in low vision rehabilitation, but it is requiring me to put myself out there and ask a lot of questions. In order to be successful in this practice area, I would need to get my Certified Low Vision Therqpist (CLVT) certification and find a job in the area. Not easy tasks to accomplish, but I know I can do it if I just put the time in and ask the right questions and make the right connections. There are also a few Graduate Certificate programs for occupational therapists to specialize in Low Vision Rehabilitation. I may explore those as well. I am starting out by doing a continuing education course through AOTA. It is providing me with really good knowledge! Low Vision Rehabilitation is such a small subset of the field and there are not many jobs that specialize in low vision rehab.

Who knows where this OT career journey will take me. All I know is that I want to make a difference in people’s lives. I feel like working in low vision rehabilitation is an area of high interest and would allow me to share my own personal experiences as an individual with a visual impairment.

On an unrelated topic, I was book shopping this weekend at Powell’s Books in Portland, and I found myself getting really frustrated. Usually I read through the use of audio books, but the specific series I was interested in reading was not available through my BARD NLS account. I was reading the book jackets and the first few pages and the print is so small!!! I got exhausted just from reading the book jackets! There is no way I can read standard print anymore! Sometimes, it is nice to just sit down with a real book and flip pages though. The large print selection of books seems to be getting smaller and smaller. I resorted to downloading the book on my iPad so that I can change the font size. I haven’t gotten too far into it, but it seems to be ok. Maybe this is just the new way of reading.

I guess that is all for now. I hope that I can start writing a bit more as I enjoy this blog and sharing my experiences as an OT and an individual with a visual impairment.

White Cane Travel

Now that I have started back to work for the school district, I am using my white cane very regularly. With this comes the benefits and drawbacks. I started using my cane about 2 years ago. When it was offered to me by my teacher of the visually impaired through Washington State Services for the Blind, I wasn’t so sure about it. Me? A white cane user? No one has ever offered this to me in the past. I was willing however to give it a shot, if nothing else as an identifier to others that I don’t see as well. I started my O and M lessons and quickly realized the benefits of traveling with my cane. First of all, it allows me to look up where I am going instead of staring at the ground as I walk. This allows me to use my remaining vision as well as more efficiently and effectively interact with my environment. It gives me a sense of confidence. I no long mistep on curbs and stairs. Changes in lighting are not as much of an issue and it tells others I don’t see well which is helpful for street crossings and interacting with and getting a bus driver’s attention.

Working for the schools I interact with many people and I love hearing students questions and ideas of what my cane is all about. My favorite was when I was walking down the hall of an elementary school and a student exclaims “she has a bomb detector”. Not quite sure how to respond to that. I was in the store the other night and a man standing next to me in line asked me if it was a special kind of hiking pole. I had to explain what it is for. It was a good reminder to me that even at this day in age, not everyone knows the purpose of a white cane. That makes me a little sad.

I use my cane almost 100% of the time when I am out and about. It has really become a part of me and I don’t feel comfortable without it now. It is amazing how much I think it has helped me. People around me have commented that I walk more confidently and faster.

With all these amazing benefits I have experienced, there are some major drawbacks to using the cane. First of all, it is supposed to detect changes in the environment around me, but it frequently gets stuck in the smallest sidewalk crack or tree root. This causes me to impale myself in the gut or hip, bruising myself. Although my travel is better with my cane, it is frustrating and stressful and not relaxing. Another aspect that annoys me is that when I am sitting on the sideways seats on the bus, minding my own business, people don’t pay attention and grab my cane as if it was a hand hold on the bus.this is an invasion of my personal space! Please be respectful. This happens more than it should.

Although there are so many benefits to the white cane, I’m not sure if it is the ideal mobility option for me…

Horsing Around

This past weekend, I did what I love to do. I rode my horse. I showed my horse. I had fun!

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All the pretty ribbons!

Over the years, I have had to work hard to learn that it’s not all about the ribbons and what color you get or what the judge thinks. It is truly about your rides with your horse and the journey to get there. I am proud to say that I finally can enjoy a horse show, have fun, and come out feeling very proud, even though I didn’t walk away with the champion ribbon or the high point award.

I have shown horses for as long as I have ridden, whether it was a 4H show, an open show, a Class A Arabian Show or a Dressage show. I have done it all. I have learned so much through my horse show experience and I love that I can look at it through a new lens and just enjoy my horse. After all, why show, if it isn’t fun. I can’t say I don’t get stressed sometimes, but it’s a work in progress.

One aspect of riding and showing that has always been an underlying part of me is my low vision. It impacts me more than I realize sometimes and it has forced me to develop a deeper level of trust with my horses. Due to my vision, I have a head tilt, which affects my body position. In riding, your body position makes a huge difference in the communication of horse and rider, especially when performing in disciplines such as dressage and jumping that require precision. I have learned to compensate for this over the years through the help of my current instructor who has accepted my low vision as part of who I am  and helped me to come up with ways to navigate around it. She was the first one to suggest that I patch my better seeing eye while I rode to help my body learn what it feels like to be straight. It is something that I return to now and again as I find that feeling fades after a while as my head tilt takes over.

My horse and I have recently taken up jumping and my lack of depth perception definitely rears it’s ugly head when I head for a line of jumps. I cannot judge my distance from the jumps so therefore I must rely on my horse to do that part for me. I find it challenging to know when she is going to take off and keep my body in the correct position so that I do not interfere with her. A majority of the time, she does her job, but it requires me to trust that she is going to do it right. It requires me to learn what it feels like as she moves towards a fence. Since we are both learning this new sport, it is going to take a lot of practice for us to master it.

Jumping!

As I reflect on the horse show this past weekend, I realize that my vision impacts me more than I realized. Managing a crowded show arena with 25-30 horses or a crazy warm up arena with horses and people going so many different directions is challenging enough for people who are fully sighted. For me, however, there is an even greater challenge added on with my decreased peripheral vision and no depth perception. I am unable to see horses and people coming up on the sides of me and when they suddenly cut in front of me or suddenly stop, I am not able to judge the space between us, making it difficult for me to make quick responses and get myself out of the situation. Probably a good think I don’t drive a car. I have had to learn exceptional arena management skills in order to compensate for this, but sometimes that is not enough. I am proud of how far I have gone with my horses given this limitation. I suppose I have never let it stop me and I never will. Though, as I grow older, I find myself thinking more about and realizing my vision’s impact on riding, instead of being embarrassed by it and ignoring it as I did when I first started riding at age 9.

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Under USEF/FEI  para-equestrian rules, riders who have a para-equestrian designation who are blind or visually impaired are required to wear a red arm band while mounted to designate that they are visually impaired. I have contemplated doing this but a few questions come to mind. I have “hidden” my visual impairment in my equestrian life for so long, how would my fellow competitors respond to this? Would they think I am “faking” it? Would my fellow riders know what this red arm band means and pay attention to it in those busy warm up and show arenas when they are focused on their own ride, especially at the smaller open shows like I went to this past weekend? I am not sure what the right answer is and if I will pursue this. I suppose it is just like my fairly recent transition to using a white cane. It would be my “coming out” in my equestrian life, just as I did by using my white cane and identifying myself to the whole world that I am visually impaired. Sometimes the benefits outweigh the negatives. I know it does with my cane, maybe it would with riding?

Welcome!

This is my first blog post! I want to welcome you all to my blog. Please check out the About Me page to learn a little more about me.

I had come across a blog called doublevisionblog.com the other day and it inspired me to start my own blog. As an individual with low vision, specifically Retinopathy of Prematurity (ROP), working as an occupational therapist, I believe I have valuable information, stories, and experiences to share that will hopefully provide hope, encouragement, and inspiration to others.

To start off, I wanted to share this article that was written about me by Children’s Hospitals and Clinics of Minnesota when I was there completing one of my occupational therapy internships last fall. Check it out here!