I was considering asking parents of children with optic nerve hypoplasia (ONH) or other visual impairments what they might like to ask an adult that lives with low vision. I remembered a question I was asked once by a mom of a toddler about school choice: a school for the blind or public school. I also realized I’ve had many parents on my Facebook page that have babies with ONH that have so many worries and unanswered questions concerning their children. I cannot pretend to know what it feels like to get the news that my child has any sort of disability. I would imagine getting the news that something is not quite right would be devastating and scary to hear as a parent.
With that said, I’ve considered the gazillion questions I might have if my baby were diagnosed with something that I knew nothing about. It just so happens, I know a thing or two about living with partial sight, specifically ONH, so I hope I can ease some worry moms and dads out there might have.
Hopefully with time you can relax a little and embrace your baby for all that she or he is and know that in the larger scheme of things, that sweet bundle of joy will be okay so long as you love and hug that little thing a lot. These kids can do almost anything they set their mind to. They can dream big and do great things!
Of course, every person is different and with optic nerve hypoplasia (ONH) there may be other issues that go along with it, such as septo-optic dysplasia, a problem with hormone production. I’m not a doctor or a medical professional of any sort so I will leave medical questions to those that know. I do not know if I have SOD along with ONH. I do know I have hypothyroidism, but that is a very common hormone deficiency and it runs in my family. It is treatable, thank goodness.
I will start off with what I believe to be the most important question that parents tend to ask. Will my baby be okay? As a parent, you have a great deal to do with the answer to this question. I believe it is important to remember that your child is not the disability he or she was diagnosed with.
First and foremost, your child is a unique individual that has the same basic needs and desires as anyone else. Along with needing food, shelter, and water, every person needs acceptance. Accept your child, flaws and all. Don’t waste a single second wishing your precious child was in some way different than what they are.
Next, keep in mind that on top of teaching your child how to adapt to life with their low vision, you need to remember they will need guidance in all the normal things people go through. I know this sounds like common sense, but I know of one mother that can’t look past her daughter’s low vision. She does not see her daughter’s talents, beauty, abilities, dreams, etc. She just sees the disease and because of this, she rejects her daughter on some level. This is the true disability the child will have to learn to cope with throughout her life. Her low vision will not be the big problem after all. Parenting is so tough as-is. A diagnosis does not make or break your child.
As to answer the schooling question, I have experience at both types of schools; public and state school for the blind. Of course, I attended school in the 1970’s and 1980’s so my opinions may be outdated. Both of these environments had good and bad things about them. But honestly, I would lean toward putting a child into public school, conditionally.
It is important that the child attend the same school district from day one. Keeping the child with the same core set of classmates helps tremendously. It allows the child to grow and learn to adapt in a ‘normal’ setting while the children around him or her grow up accepting the disability. It’s good for ‘normal’ children and the child with low vision.
Another important condition that must be in place is a good itinerary teacher. Public schools must by law provide education to all students, blind or otherwise. To do this, a vocational teacher most likely will be assigned to your child from day one. This teacher will work with the child at least weekly along with the educators and parents to ensure the child has adaptive equipment necessary and other resources. This teacher may help the classroom teacher obtain large print books, Braille, etc.
Personally, I was lucky enough to attend the same school from first through fifth grade. I had an amazing vocational teacher who is still to this day a very good friend of mine. She taught me the value of education and she taught me to believe in myself. I love her like a mom!
From sixth grade on, I moved a lot from school to school. Adapting was no problem thanks to the skills I was taught by my early vocational teacher. I was ready and able to function in a public setting. Socially, however, it was extremely difficult. The kids I had grown up with were not the kids I was suddenly in class with and they had never been exposed to someone like me. I was suddenly teased and treated poorly. I went to nine different schools from sixth through 8th grade, three different schools a year. That was rough. But, I survived and lived to tell about it.
My senior year, I was enrolled into a school for the blind because I had foster parents that decided this would be best for me. That was a difficult transition for me as well. I had been moved so many times, and survived, so I did not like this move at all. Looking back, I’m glad I had that opportunity. I met some great kids and had the chance to see there were others like me out there. Some kids had better vision than I did and some were totally blind. But at the end of the day, they were teenagers just like me. I started off at that school with a grudge. I did not feel I ‘belonged’ there. But in the end, I had the chance to meet some really cool people and do some really fun things, like learn how to cross country ski.
Anyway, I hope I’ve eased some of your concerns about your child and how things will be for him or her. Just always remember that your child is just a kid. She or he can do dishes and clean bathrooms, learn to use the vacuum and sweep the floor even. And yes, cook. Your dishes might even be cleaner if you let the blind kid do them. She or he has to feel for the dirt! Good luck in your parenthood journey. Have an open heart and all will be perfect.
I like to think of myself as a typical mom. I have to adapt due to low vision sometimes, but basically, I deal with the same things as most American moms. One thing I do that is typical is put my needs on the back burner. I don’t get new clothes until everyone else has what they need in this house for instance. I don’t mind this. I want my kids and my husband to have what they need and want first. It brings me pleasure and happiness to see them happy and to know they’re provided for.
I realized this morning though while working on my computer that there are things I need in order to comfortably see that I haven’t allowed myself to get because of this back burner mom deal and it’s not working out too well. This is my own fault. My husband supports me and tells me to get the things I need of course. For some reason though, I have not felt as if the latest Zoomtext program or a new monocular are important enough to ‘splurge’ on.
Right now, I have Zoomtext version 9.1 installed on my computer, which does not work with most websites. I don’t know enough about coding or HTML to understand why this is, but it is. I constantly turn my Zoomtext program on and off depending on the site I’m on. Zoomtext is meant to work on all sites. They have come out with updated versions many times over since I got this version so I’m not keeping up.
I think I’ve mentioned before that we gave up our city life for that of the quiet solitude of the country. We decided last summer to rent our house out and find a place to rent ourselves in the country to see if it would work for us. We had talked about living in the country many times, but because my husband is the only one that drives, we didn’t think about it seriously really, which is why we are renting for now.
Since living out here, I have not felt any more isolated than I did before in the city. In fact, I feel more free out here. We’re on a little eover two acres, which gives us plenty of room to compost, garden, and even raise chickens.
I have found composting to be extremely rewarding. This sounds strange, I’m sure but the sweet smell of getting it right is rewarding. Adding dark, rich soil to my garden bed that was made by our leftovers is exciting!
My garden bed is just about ready for me to plant seeds. We have corn, beans, onions, bell pepper, tomatoes, cilantro, etc. I planted wildflowers in the front of the house last fall, which should start to bloom any day now.
And of course, we had to get some baby chicks. I did a little research and found that buff orpingtons are a good chicken for beginners so we got five of those. They lay a decent amount of eggs and they’re friendly. We’ve had the five chicks for almost two weeks now. They were a day old when we got them. Wow, they’re cute and fun.
As a visually impaired person, there is nothing greater than putting something in your hands to ‘see’. Holding the baby chicks and touching their softness is amazing. I can really see them well when I put pictures of them on the computer and use Zoomtext to magnify them. I am so glad to live in a time when this is a possibility. I think my kids do without things that other kids may have but because of our choice to move out here, they get to experience things that others would not so it’s a fair trade off I would say.
The one thing I am unsure about is my garden. I have seeds. I have a plot ready mostly. I also have the fear of spiders and other creepy crawly things. Of course no one likes these things, but I wont see them until I touch them. Plant differentiation is also a worry. I am thinking of ways to mark where each plant is. I’m thinking plastic ware could be placed where each seed is planted. Maybe forks for beans, knives for bell pepper, etc. I am also thinking of painting wooden stakes with neon colors to mark the rows. I just need to be sure I can decipher between weeds and plants. Anyway, there’s no sense in stressing over it. I can get out there and give it a shot or sit here believing it’s impossible. I don’t think anything is impossible so I’ll type at ya later.
What is Your Talent?
What can I do with my eyes closed? A lot of things of course, but the best trick I think I can do is counting change without taking it out of my pocket. That’s right. You can tell what coin is what by feel alone. That’s a party favorite.
But, this blog is mainly about hygiene and appearance, as I see it (or as I don’t). I remember being a teen with low vision all too well and trying to stay trendy and keep up with the latest looks. I couldn’t look at photos on a computer in those days using technology to enlarge the picture like I do now. Things like socks and shoes stressed me out because I could not see what people were wearing on their feet. It sounds silly to me now, but trendy shoes and socks were important!
Makeup application was a thing too. Girls learn how to do their makeup from other girls. Blind girls learn how to do their own makeup without a mirror and we can do a pretty good job too most of the time. I learned how to put on lipstick, eyeliner, and mascara without a mirror. There could be a thousand mirrors and I’d still not use one because I can’t.
Eighties hair was a big deal man. Lots of Aqua Net and at least an hour with the curling iron every morning were necessary to reach desired bang poof, at least with my baby-fine hair. I had totally blind friends that managed the awesome eighties hair too, better than I did. Your hands can tell you whether the hair is smooth or if the poof is ‘broken’. The point is, low or no vision doesn’t mean you don’t care about style or wanting to look good and it is possible.
Speaking of, once I had children taking their pictures was amazing. By then, there were digital cameras and I had software on my computer that allowed me to enlarge the screen to see detail like never before. I took lots of great pictures of my girls when they were small. I also noticed many of my greatest pictures show stains on their clothes and messy food face or juice mustache that I didn’t see until getting the picture on my computer. I suppose I often don’t notice things that other moms might catch, like messy hair or clothes that don’t match. Sometimes I don’t see a hole or torn up shoes.
The good news is, none of these things really matter. Who cares if my fingernail polish missed my nail and landed on the skin instead? The effort is still there and I feel good about myself. Socks don’t make a person and neither does a perfect poof. In the pictures of my children, there is one thing that does exist and you can see it loud and clear. Love. Love is all that truly matters.
Here's how I do a reverse french braid!
Missed opportunities. We all miss out. Life events, poor decisions, insecurities, and disabilities cause them in everyone’s life. It’s not something worth dwelling on of course, but it is something that happens and when you can’t do much about it, it hurts.
Just before my sixteenth birthday, I started thinking about what most teens think about: driving. Getting the keys from mom or dad is a right of passage. Driver’s ed class, learning to parallel park, being yelled at by a parent in the passenger seat not to hit the brakes too hard. These are things anticipated by most teens in America I think. Funny enough, it did not occur to me that I would not be able to have these experiences.
When I was seven, an ophthalmologist told my parents and me that I would never ride a bike; my vision was not good enough to do so. This prompted my father to go home and get out my older sister’s small bike with training wheels and teach me to ride. I learned, never doubting that I could ride that bike. I was eventually allowed to ride around the block on the sidewalk by myself, or anywhere that my siblings were willing to ride with me. I knew I could do anything after that.
So as my sixteenth birthday approached, I was looking forward to getting my first car. By this time I was in my fifth foster home so it wasn’t my parents that I asked for said car. I remember the moment I asked for a car like it was yesterday. The foster mother at the time looked bewildered and began to laugh. She did not mean to be cruel, of course. It was just so obvious to her and everyone else that me driving wasn’t going to happen. My argument? Well, a foster sister could drive for me. Problem solved.
So when the big day came, somehow I expected to find a car in the driveway. Sure enough, there was a car in the driveway. It was a gas station toy convertible car, which wasn’t what I had in mind. I was crushed. I think that moment was when I truly understood how different my life would be than that of my peers. But oddly enough, it did not bother me too much until I became a mother. And like my sixteenth birthday expectation, I didn’t think this through.
The inspiration for this blog post came yesterday when I received an email requesting I schedule a time for my girls to have a dress fitting for a bridal event they will be modeling for this weekend. They do this once a year. The times available to have the fitting done coincided with the husband’s work schedule. I had to ask my husband to take time off this week to get us there for the fitting. Doing this occasionally isn’t a huge problem for him, but it isn’t always possible and if he asks to leave work too often, he can get into trouble.
I just knew there would be no way for my kids to participate this weekend if the husband couldn’t do it. I was sure he wouldn’t be able to get the time off. Long story short, he came through and was able to find a time he could get us there and I am beyond grateful.
But what about those times he cannot get the girls to an event? Or the times I would like to run to the grocery store for an ingredient I need to prepare a meal for dinner? Compromise is key in our family, and It works. It also teaches my girls to appreciate when they do get to go places or when I have what we need to bake cookies.
My girls used to dance with a competitive dance team. We managed to make this work for a few years. They were at different levels of ability so they needed to take classes at different times. No biggie, right? Just drop them off and pick them up as needed. Not in our case. The husband finishes work at 5:30 and gets home by 6. Dance class may start at 4 or 5. The competitions were on weekends across the state so weekend travel was necessary. It was exhausting for my husband and uncomfortable for me to put him in that position. Needless to say, we took them out of competitive dance over a year ago and they miss it.
For ten years, we lived in a small city, with a population of approximately 100,000. This place was large enough to offer special transit so I could schedule a ride 48 hours in advance if I needed to. I did this for dance sometimes, but the schedules were inconsistent. I would have to be picked up two hours before dance class started to get there on time because the driver would have six other stops scheduled along the way. This worked out when I was homeschooling my girls, but not so much when I put them into public school because they got out of school an hour before dance would start. We would miss dance class and the dance teacher would be disappointed.
Over the summer we moved to the country. Special transit does not run out here and I’m okay with that. I could not get to the bus stop from our old house because there was no way to cross the busy road to get to the stop close by and when I used special transit for the grocery store once, it took seven hours total just to get $25 in groceries. No thanks.
A positive outcome of the inability to go places is that my girls are super creative. We buy books by the bag at thrift stores and the girls read. They love to paint and make cardboard dollhouses. My eleven-year-old bakes something new at least once a week and they have created their own youtube channel as a creative outlet. My younger daughter helps me garden and is looking forward to raising some chickens soon. She’s helping me build a chicken coop.
Most importantly, they know I would take them around the world if it were possible and they deeply appreciate their dad sacrificing his Saturdays for trips to the museum or other activities to make sure they have an awesome childhood, as do I. Compromise and missed opportunities makes for a creative life. Maybe I should consider not driving to be a blessing.
In case you are interested, here's one of the videos my kids made of our cat. Feel free to like and subscribe to their page! They would appreciate it. :D
There are many parenting blogs on the web. They cover everything from how to deal with a child’s behavioral issues to sibling rivalry to diet and many other parenting topics. There are also blogs written by parents of children with disabilities as well. Blogs are a great way for parents to network and gain insight and support along their journey with like-minded people. For parents of blind children this is a valuable resource and it gives a sense of community and understanding to an otherwise seemingly lonely journey.
There are very few blogs, however, for parents that have disabilities themselves. Adaptation is necessary for these parents to ensure the safety and well being of their children and coping with everyday parenting challenges is different for people with disabilities. As a visually impaired mom, I know this feeling all too well.
Parenting is the hardest job anyone will ever do. It can be uncomfortable and difficult at times, yet the greatest source of joy a person will ever know. I am so grateful that my daughters were born and I get teary-eyed just thinking about how much they truly mean to me. I know most parents understand this completely.
When I learned I was pregnant, I believed my daughters had little to no chance of being blind or visually impaired, as geneticists told me when I was seventeen that my vision loss was caused by fetal alcohol syndrome so I did not touch a drop of alcohol while pregnant. I did not, however, think through the hurdles my girls would have to jump to reach adulthood because of my vision impairment. They have it okay, for sure, but I have to be honest with myself and admit that they do miss out on things other kids get to experience because of my limitations. Even so, I would like to think that because of my low vision, both of them inevitably would grow into more compassionate, patient, and loving people. What more could a parent want?