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.