Hello Shifty-Eyed friends!
I realize it’s been a long time since I’ve posted to this blog. So many things have happened since I started it back in 2009. I guess I can’t really say I’m a “young person trying to navigate through newly acquired adulthood.” I’m in my 30’s now, I’m married. I’ve had my first child 🙂 I feel bad for neglecting this project, but at the same time, my life has been so busy, so fulfilling, so AMAZING, that I haven’t really had time. Which I hope is great news to the parents out there who are worried about their children with nystagmus.
I thought I’d give you all a bit of an update on what’s been happening with me. I may have mentioned some of these things earlier, but here’s a summary anyways:
I Got Married
To the wonderful boyfriend who used to drive me everywhere ❤ Our 6 year anniversary is coming up. He is an amazing partner.
I Got My Drivers License
I did post about this earlier, but it’s worth mentioning again, right? 🙂
I Had a Baby!
And to answer your first question, she does not have Nystagmus. I wouldn’t have cared either way, but as you can imagine, we did look carefully for a few months. Jury is still out on whether or not she will inherit my astigmatism. She is my best girl, and so much fun. The biggest problem we’ve had so far was that she would only sleep on me for the first four months of her life. Needless to say, I learned to live on much less sleep But she’s sleeping great now, and is the joy of my life.
I Advanced My Career
I now work in tech startups, and it’s pretty great. After working in a very corporate environment for a long time, I’m now in a much smaller, more casual place. It is however, further away from where I live, which leads me to…
I Extended My Commute
To one of the worst commutes in the United States. It’s less than 10 miles from my house, but it can take me up to 2 hours to get home on a bad day 😦 But the good news is, I’m sooo much more confident when I drive now. Because it forced me to be. By challenging myself in this way, I’ve gotten more comfortable driving than I ever thought possible. Congested Los Angeles traffic? No problem. Freeways? Annoying, but doable. Driving at night? No big deal. I’ve done it all. And now with a baby in the car! I honestly didn’t know if I could ever say that. I’m so grateful.
This blog has been a wonderful way to process my feelings about Nystagmus as I made my way to adulthood. The Nystagmus community online has seriously flourished since I started this. There didn’t used to be much, but now with the advent of social media, more and more people are connecting every day. It’s lovely to witness. I encourage all of you to continue to connect, write about your experiences, and talk to each other.
I will probably not post on here very much going forward, but I will always keep this blog live so that you can see my experiences, and you can connect through the comments as much as you want. I do read all of your comments and follow your responses to each other. I’ll try to chirp in when I can.
My parting advice for you is this: Never set limits for yourself or for your children. You don’t know what you can or cannot do unless you TRY. Sports? Yes! Driving? Yes! Jobs? Yes! And maybe you try something and it doesn’t work out or it isn’t for you. That’s ok! Now you know, and it’s on YOUR terms. And you never know, it may work out later.
Live your life to the fullest, and don’t let anything – not even shifty eyes – stop you from achieving your goals.
Huge congratulations 🙂 Great to hear things are going well for you 🙂
Thank you for sharing ….so very helpful.
Thanks so much for helping ease my mind as a mother of a newly diagnosed sweet baby girl.
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Hi! As a mother of an 8-year-old daughter with CN, I was wondering if you have the time to answer a couple of questions. It would really mean a lot to me.
Did you have difficulties concentrating in school due to your nystagmus? Did you get tired easily? Was it hard to focus on the blackboard? I’m asking because my daughter is very tired when I pick her up from school and she sometimes complains that school work is hard.
Thank you for sharing in your blog!
Kind regards, Nanna
Hi Nanna! I am happy to answer your questions. Yes, sometimes it did get tiring in school. Sometimes it took a lot of work to focus my eyes on what I was supposed to, especially if I was far away or at a bad angle that made the movement more exaggerated. Some things that helped:
– To be seated closer to the front of the class and at an angle that favored my null point. This is probably the biggest thing that helped overall. If you are working all day at an angle that makes the movement worse, you can get very tired very quickly. If you are sitting in such a way that minimizes the movement, it’s sets you up for the most success throughout the class.
– To be able to hold books and handouts myself in a place that felt comfortable to me. Sometimes as a child I was asked to look over a shoulder and share a book or handout with another student, and this was especially problematic because it almost always worsened the movement to look at things from that angle. I had to learn to ask to hold it myself and have someone look over my shoulder, or to ask if I could have my own copy.
– Asking to move closer to the board temporarily if needed. I learned to raise my hand and ask if it was ok to move closer to the board temporarily so that I could copy the relevant information, and then go back to my seat. Or sometimes I might stay after class was dismissed and let the teacher know that I could not read what was on the board, and could they help me with what I was missing.
– Good sleep habits. Tiredness is a common complaint among people with Nystagmus. Constantly trying to focus your eyes is physical work. It helped to make sure I got enough sleep, because being tired to begin with makes the movement worse, which makes it more work to focus my eyes, which makes me more tired, and so forth and so on in a bad cycle.
So, ways you can help your daughter would be to talk with the teacher and see if they can accommodate your daughter by letting her sit in a place that is optimal for her vision. My mom always called my teachers ahead of the school year to explain the situation. You can also write a letter or email. I don’t know where you live, but in the US some parents have a lot of success with state-mandated plans called an IEP (Individual Education Program) that include accomodations teachers are required to follow. I never had one of these; we were usually able to work things out with individual teachers. But if that isn’t working, then you can look into this option as well. more importantly, teach her to be her own advocate, and not be ashamed to politely ask the teacher to accommodate her own needs. Lastly, make sure she has enough rest.
And remember, sometimes school is tough no matter what your vision is like, so it’s ok for her to be a little tired and to say that school is hard. That’s true for a lot of children for a variety of reasons. As long as she keeps moving forward and doing the best she can, I’m sure she will be alright. For me, looking back I can now appreciate that I learned to work through the difficulties and advocate for myself, because it helped me work through similar difficulties outside of school and in the real world.
I hope this helps!
Thank you so much! We live in a small town in Denmark where nobody has ever heard of nystagmus, so it is so nice to hear about the experiences of someone who has it! And thank you for the excellent advice!
I’m so happy to have found your blog. My son is 16 and has his license, but after a couple of near misses we have him back to driving accompanied only. I was wondering about the issue of not acuity but the visual
Complexity involved in driving and your original blog post answered that. It is good to know there is hope
Thanks for your comment! I’m happy you are finding this helpful and that your son was able to get his license! What a big accomplishment! This is truly the ultimate goal for many people with Nystagmus. I have found that a lot of the problems that come with driving are confidence levels. If he was able to legally get his license, he can definitely see well enough to drive. Many young drivers get into close calls. Many experienced drivers get into close calls. I completely understand wanting him to drive supervised for now. But I do encourage you to use this time to work on his confidence as well. Let him know that the goal is to get him to drive by himself. The more he practices, the better he will get. What helped for me was setting my own boundaries. I didn’t push myself to drive at night. I allowed myself to not use the freeways/highways even if it took me longer to get somewhere. I only attempted something if I felt ready for it. It really allowed me to feel in control and that helped my confidence levels immensely. I was able to push myself when I was ready to do that. Good luck to both of you!
Actually i want to ask that don’t you find difficult to work on.computer due to nystagmus.
My daughter is almost 15 and her best corrected vision is 20/100 although I feel she sees better than this in how she functions in life. She has never let her vision get in the way of what she wanted to accomplish. In Georgia she would need to see 20/60 to pass the vision test. We are in the process of getting her fitted for a bopitic lens which she would need to wear to be able to get her license. It would be implanted on her glasses like a mini telescope. Have you seen or heard about these lens or know anyone who currently uses them to drive with nystagmus?
I’m a 20 y/o and I was born with nystagmus. When I was younger I always had to sit up front and close so I could see but everything else vision wise was super easy for me. I’m now starting to ahve a lot of trouble when i comes to drving at night, while its raining, or theres heavy thick fog. I’ve always been told that glasses would never help me and surgery may not even work. Any advice? I’m worried I’ll lose my license soon. Thank you.
I am writing this with a tear filled eyes ..i have been trying to learn to drive for years now and I still can’t confidently drive…my husband is now teaching me and he seem not to understand my eye condition he feels I am just being difficult or scare..yes I am scared but it’s basically neca6of my eye…i really want to drive but the dear of my sight won’t let me. I sta in Philadelphia and I have an 18 months old daughter who doesn’t nystagmus….nu Dr said it’s the sgku eye that cause my poor vision cause every other thing in my eye is great and healthy…i and two of my other siblings were born with it …but our parents do not have it.