Accommodations at Home

Since Lynk's eyesight has gotten so bad over the past few months, it's been harder and harder for him to do certain things. Watching TV, playing iPad, reading, writing, doing any kind of homework are all now more challenging than before. To watch TV, Lynk has a small folding chair he pulls up right in front of the television, because otherwise all he sees is moving blurs across the screen.


To play iPad, he holds the device about 6 inches from his face. Soon, we will be looking at apps to put on his iPad, such as magnifiers, that could be helpful to him in daily life. I've recently joined a Stargardt's Support group on Facebook, and the group has been very helpful in talking about the various visual aids people have found useful, like certain phone or iPad apps.

Since we can't get in to see the low vision specialist for a while, and have no way to truly know what visual aids Lynk needs, we are guessing, and doing what we can to make things easier for Lynk to see things better.

One thing we've noticed is that homework and reading are extremely difficult for him. Not only because he needs to use a magnifier, but in order to get into the right position to use the magnifier, he had to get up on his knees, and lean all the way over the table, so his upper body was perpendicular to the table. All that leaning and slouching at home and at school was starting to cause him to get mild backaches, and isn't good for his posture.

So, at school and at home, we've introduced the slant board. His slant board at home is more sophisticate than the one we've fashioned at home, but they both serve the same purpose. A slant board is simply a slanted clipboard. It holds the paper or book up so that Lynk doesn't need to bend over to see it. It holds his papers closer to his face, easing the strain on his eyes and back, and lets him get into a better position to read or write. At home, we made a slant board out of two large three ring binders and a couple of rubber bands. The rubber bands not only hold the binders together, but serve as rubber traction so they don't move all over the table, and they can be used to hold papers to our DIY slant board.

The video above is showing how Lynk uses his home slant board and magnifying glass to do homework. This is our new normal. It's a bit different, but it works for Lynk. At first, I know that I especially was having an extremely difficult time dealing with Lynk's diagnoses. I was going through so many different emotions. Guilt, for having passed on this recessive gene to my son, anger at how unfair it is that a 6 year old got saddled with this disease, and a lot of hurt and sadness.

While I'm still anxious about the future, I'm much more okay with it now. I think I've begun to accept Lynk's diagnoses, and will do what I can to make sure Lynk has as normal a childhood as I can give him. And if that means we use slant boards and magnifiers, and let him sit as close to the TV as he wants, then so be it. The bright spot in all of this so far is that Lynk is completely unperturbed about all of this. He doesn't think of himself as different. He know he is the only one with a special slant board at school, and he's never even questioned it. It's as if he is just taking everything gracefully in stride, never complaining, never worrying. It's his childhood innocence, and I'm hoping he keeps that for a good long while yet.