Raising a child with a visual impairment

I implied in an earlier blog that I would explain more regarding our middle son, and this might be perfect timing.

Our middle son was born with Congenital Optic Nerve Atrophy and Stationary Night Blindness – put simply he has a visual impairment. His vision is called Low Vision. This means his vision does not correct with standard glasses, contacts or surgery. His vision is what it is and it will never get better. It’s a stable condition, so it shouldn’t get worse, but we never walk out of an ophthalmologist’s office feeling great. His last visit was a few months ago and I’m still trying to digest the information we received. Initially it was thought that his vision was blurry – correctable with glasses to 20/275. Then a year later we learned that he had missing or distorted pieces with his visual field and then we learned that he had night blindness – meaning that his eyes do not accommodate for low light conditions. Like walking into a movie theater – if you stand there for a minute, your eyes adjust. His do not.

Now that he’s older and able to truly complete some of these tests and describe his own vision, my heart sank a bit when I read the report and listen to the doctor describe his vision. It’s actually quite different then what we had thought. He does in fact have night blindness, but his overall visual field is distorted everywhere – like looking through dark wrinkled cellophane with islands of clarity – 20/200 clarity that is – so still blurry. It actually makes a lot of sense. He trips over everything, unless he looks down. He hated his bifocals, because they were actually cutting through the islands of vision. His eyes do not accommodate for near vision. Meaning that his eyes do not adjust to looking from distance to near, so even with the bifocal it wasn’t making his acuity any clearer. His pupils do this funny thing – get big and small – frequently when he is looking at something, because they are trying to adjust between these islands of vision.

My heart sank as a mom, but I’m also his Teacher of Students with Visual Impairments (TVI) and Certified Orientation and Mobility Specialist (COMS). I quickly put on that TVI/COMS hat and remembered that he was going to be just fine. This is all he has known and he has accomplished so much. He was a competitive gymnast for several years. He is in a regular education classroom. He received honorable mentions at the end of the school year. He is now trying different sports and becoming more outgoing. In the field of blindness there are so many options for him and technology is truly an essential part of his life.

Looking at this child, it’s hard to believe he has a visual impairment. He has great “functional vision”. This is how he uses his vision to function within his daily activities. Overall, he uses it very well. One might never notice that he has a visual impairment, until he looks at a phone, computer, TV or tries to find a familiar face beyond 8-10 feet.

Being his teacher is easy. Being his mom is hard. As his teacher, I know technology is going to be his best friend. I know that he will be the kid teaching his teachers and peers how to use their own technology with greater efficiency. As his mom, there are days I want to wrap him in bubble wrap or at least his heart. He wants to try everything his friends are doing – including all sports. Just like any other district, sports are held on some invisible pedestal and if you are athletic you are worthy somehow, or at least in the brain of a 6th grader. Last night at dinner he was mad because he doesn’t think he is going to be a starter in football. Ugh! This is such a pull on my heartstrings. I just want to ask him – “Do you really think football is for you?”

Last summer he spent a week at a camp for kids with a visual impairment. He made great friends and had a great time. They went canoeing, rock wall climbing, hiking, swimming and played Goalball – a sport designed specifically for people with a visual impairment or blindness. (A sport I played as an intern and was petrified!)

No.-7-throws-towards-defenders-

(http://www.borp.org/the-19th-annual-borp-goalball-invitational-is-on-dec-7/)

He didn’t have time to go back this year, but really didn’t want to either. He doesn’t want to be seen as the kid with a visual impairment. He wants to just be himself. He doesn’t want to do anything that will set him apart from his peers. I know this is all normal 6th grade boy feelings, but I also know that it can be common among kids with a visual impairment.

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(http://www.afb.org/info/living-with-vision-loss/using-technology/12)

He has to realize that he will always be a little different. He will always need information in a large print or digital format. He will always have to have technology that will allow him to see distance information and magnify near point information. He will always use digital format for reading, if he wants to remain competitive with his sighted peers. He will (or should) always use a cane at night to be independent. He may get his driver’s license, but it will be for Bioptic Driving and he will have restrictions on his license. He will need to learn to ride public transportation, if nothing else, as a backup plan.

 

As his mom, I just don’t want his heartbroken when he is not the starter. I don’t want his heartbroken when he does sit on the bench. I don’t want his heart broken when he realizes that he will always do things a little differently because of his vision. Being a parent just sucks sometimes. No one ever tells the expectant mom – Oh, its awesome to have your heart ripped out, stomped on and eaten alive by vultures, and there’s nothing you can do to prevent it.

Boy, this is a downer of a blog 😦

On the upside…this is the most compassionate kid you will ever meet. He has the strongest sense of fairness. He always sees the good in others and continually extends the olive branch, even when I want to shake the olives off and burn the leaves. He is happy hanging out with friends, but just as content to be alone. He probably has a greater sense of who he is than any of his 6th grade peers, and I just don’t give him that credit. One day he is going to be the best husband and father. I see so much of my husband in him. He is sensitive, giving and a care taker by nature.

My life is so different from what I had planned and most of it is because of him. We realized there was something wrong with his vision as a preschooler and by Kindergarten, we had asked that the Ohio State School for the Blind to come and do an Orientation and Mobility Assessment. This looks at how the child navigates an environment – both familiar and unfamiliar – and then determines if specially designed instruction is necessary. It was through conversations with this evaluator that I was introduced to the TVI/COMS field. I never in a million years would have thought that I would be teaching students who are blind or have a visual impairment, let alone be the parent of a child with a visual impairment. All because of this kid, my career has taken a turn I never even knew it could.

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