Update on Vision and Motor Skills

Lyra wears her glasses now all the time, rarely taking them off except for at night. This is wonderful, however now they are nearly too small for her. They are beginning to leave marks on her nose where they are too tight, and they barely reach over her ears. This STINKS! I can’t believe we are already going to have to spend another $200+ for a new pair of glasses. Eventually, thank goodness, she won’t be growing so fast and her glasses won’t need to be replaced as often.

At close distances, those less than 6 feet or so, she seems to be doing great. I don’t notice her putting books right up to her nose anymore. She does stand/sit fairly close to the TV, but then again, so do many fully sighted toddlers. 🙂 I’m anxious to see how she’ll do this spring when she can play outside. How far away can she see a tree, or a car driving by, or a cow, or a flower, or all the other outside things that she hasn’t learned about? 🙁

Her next appointment with her pediatric ophthalmologist is in March. (YES! I finally learned how to spell that word correctly) Anyway, we’ll probably try to wait until then to get her new glasses, in case her prescription changes. Everything else looks good. I rarely see the nystagmus anymore and we have not seen her strabismus coming back.

It is much easier to tell you how Lyra is doing with her vision, fine motor, and gross motor skills by showing you. Here are 3 different videos demonstrating Lyra’s various abilities and quirks. You’ll see in the first video, based on the appearance of the floor, that there’s definitely a reason why the nursery workers at church have nicknamed her the Platinum Tornado. 😀
Notice in the second video how inconsistent her O&M skills can be. She uses her vision and weaves through a room full of toys perfectly one time and then a minute later walk through the exact same path and fall all over the place. It’s hard not to laugh. She is too cute!


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Orientation and Mobility Assessment

 

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Lyra had her first Orientation and Mobility assessment on October 16th. She was 17 months old. I had been and still am doing a lot of research on Orientation and Mobility, and the benefits of the services to infants, toddlers, and preschoolers. Orientation and mobility(O&M) is 3 things: knowing where you are, knowing where you want to go, and knowing how to get there.

Do kids with albinism need these services? Maybe…maybe not. It depends on a lot of things. It can’t be determined based on visual acuity alone. It depends on how they are using the vision they have, how they are moving in their environment, and if they are doing this safely and independently. It’s important to know that many children with low vision will figure out how to move around safely and independently in familiar places like home or daycare, without difficulty. However, behavior in unfamiliar environments can be surprisingly unpredictable. Regardless of your child’s visual acuity, it is very important that your child receive a thorough assessment by a certified orientation and mobility specialist. If a child is moving around in his/her environment, whether that’s rolling, scooting, crawling, pulling up, or walking, he or she could potentially benefit from O&M services. Continue reading “Orientation and Mobility Assessment”

O & M Patrol

 

On Saturday March 31st, my husband Troy and I participated in a training session through the Children’s Center for the Visually Impaired called O&M(orientation and mobility) Patrol. The goals were to get an idea of what its like to live with low vision and to gain a better understanding of various ways to improve orientation and mobility for our daughter. There were a total of 48 parents and grandparents of children with visual impairments. First, we listened to/watched a presentation covering the basics of orientation and mobility. Orientation is knowing where you are in space and where you want to go and mobility is being able to carry out a plan to get there. We learned a lot of great techniques, activities, and tools to help at all the various ages and stages of our child’s development. We even got to look at and play with a few “mobility tools” like a white cane and this electronic sensor thingy that vibrated in your hand when you walked too close to an obstacle. Honestly, before this training, the idea of Lyra ever using a white cane to get around gave me a huge lump in my stomach. It’s not such a scary thought anymore.
After our classroom instruction it was on to the field training. We were all grouped into pairs and then assigned a coach. Troy and I were together. Each group was given a pair of simulator goggles that simulated as closely as possible, the vision of their child. Our goggles simulated 20/400 vision. They also gave us money…$3.25…wooohoooo! I wore the goggles first. All 48+ of us had the same assignment. We had to walk out of the building to the bus stop on the corner, take the city bus to Crown Center Plaza (DON’T FORGET TO ASK FOR A TRANSFER), walk around the shopping center and buy something for less than $2.00. Then we switched, and Troy basically did the same thing and then took the bus back.
At first, wearing the goggles was a little nauseating. Even just walking was weird feeling. One difference that I noticed right away was my depth perception. Its hard to sit down on a bench when you aren’t exactly sure how far away it is or knowing where to put your foot to step onto an escalator. I couldn’t read street signs from the bus and when we went into a coffee shop to buy something I couldn’t read the menu. Thank goodness I had my “sighted guide” Troy there to help me order my coffee. I also frequently found myself putting my face really close to things. I doubt someone would want to buy any of the bagels after watching me with my nose an inch away from them trying to see what kind they were. That kind of made me sad…worrying about what onlookers might think of my child. Overall, my vision wasn’t THAT bad, which was comforting. I would have liked to take the goggles home to wear longer and see what it would be like to do all the stuff I normally do with low vision.
This program was a wonderful learning experience. We each received our own little award certificate in recognition of completing the O&M training. We were also sent home with a huge packet of information and resources for orientation and mobility. And even though it only lasted a short time, I was very grateful that I had the opportunity to take a look at the world through my daughter’s eyes…kind of.

Here are some articles/links for more information:


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