The day before his 4th birthday (February 25th) I took him to the Optometrist as I felt he needed his eyes checked because he was standing too close to the TV and looking really close at things (as in inches from his face). I figured he may need glasses. What I was not prepared for was the optometrist telling me my son was basically blind and if we did not act now, he would most definitely end up that way. We were referred to a pediatric opthamologist at the Children's Stollery at the University of Alberta. The appointment was scheduled for nearly a month later.
As a parent, probably one of the worst things in life is hearing that your child has a condition that may be a lifelong battle. The hopes and dreams you had for your child rapidly diminish as you feel this sense of panic. You have unbelievable guilt and anger wondering how you did not catch it. You spent countless hours with your child, yet they seemed fine. A few issues here and there, but what 3 year old doesn't have issues? So he was a bit clumsy... so was his older sister, and her vision is fine. Some children are just more prone to walking into walls than others, it doesn't mean anything. And the tantrums ... he's 3, of course he doesn't want to do anything for himself, if he can get away with it. He's trying to exert his control over the situation, he's coming into his own at this age.
Then you watch, and you see it. The tantrums are caused by frustration of not being able to see the boots on the rack when asked to put them on. The walls are in a dimly lit room, there are no light cues to indicate they are there. You moved the table over 6 inches and that was enough to cause him stress and grief. There are many more clues, but I think you get the point.
So now the waiting begins and that month of waiting seems to take years. You listen to people asking you how YOU did not notice and you realize that NOBODY noticed. Not the grandparents, not his dad, not his preschool teachers (other than he looked at things awfully close), not his dayhome provider. Nobody noticed. You feel a bit better and a little less adequate as a parent.
Then comes the fear and dread where you wonder if your child will have a "normal" life. Will he be able to play soccer, shoot a gun at a target, drive...? Will he be able to see the teacher and blackboard in school? Will he have a normal life? Then it occurs to you, he has done many of these things already on his own. He has adapted. He has learned how to cope and he does not know any different, hence the reason he was unable to tell you that he does see the world differently than the rest of us. Nothing has changed to your child at this point, even if it feels like your world has come crashing down. It can only get better for him from here.
March 20th rolls around. The anticipation is intense. You want to hear that the Optometrist was incorrect and has no idea what he was talking about. It doesn't happen. The Pediatric Opthamologist confirms the diagnosis. Your son has a condition called Isoametropic Bilateral Amblyopia. Without corrective lenses he is considered legally blind in both eyes. His brain has not developed in the vision department and has no idea what it is supposed to be seeing so it's not as simple as just putting on glasses and voila he can see! He also has a gigantic refractive error called severe hyperopia (farsightedness) that is at 11.0 diopters. You feel that dread again. That glimmer of hope is gone that you were holding onto so desperately.
The opthamologist prescribes corrective lenses at a +9.0 (the other +2.0 are to account for his age, 4 year olds do not see perfectly yet) and dilation drops to be used for the next 3 weeks. You find immense hope in this even though you don't quite understand it. Now comes the hard part, getting your son to wear his glasses to ensure they do their job. He receives them March 30th.
Over the next few weeks it is touch and go with the glasses, but one day he does not take them off and that is the day where the changes start to truly occur.
You meet with the Canadian National Institute for the Blind to ensure that your son has developed properly over the time he has not been able to see. You find they are an amazing resource and assess your son and help you develop exercises to trigger the brain to respond properly to the new found vision the eyes are now supposed to be seeing.
May 30th: 2 months later: Eureka! It is working! Your son is running around chasing ants for the first time! His favorite words are "Mom, did you see that?!" His world is changing and his vision is coming. It may not be perfect, but it is much better than it was. At times you feel overwhelmed by it all. Other times you feel like your heart is going to burst with joy. Watching him chase ants around the yard, playing with worms, kicking a ball around and inspecting everything and anything is a sign that everything is going to be all right.
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The first picture is how a person with normal vision sees a scene (0.0 diopters). The second is a simulation showing how a person with Hyperopia of 9.0 Diopters sees that same scene. Logan's uncorrected vision is 11.0 diopters, so it is actually worse than the second image. The glasses correct his vision somewhere between the two at this point. Because we have not seen the opthamologist again (next appt in June 19th) all we can go by is his actions and he is definitely seeing a lot more of his world.
Update since June appointment: The glasses are doing their job and his vision has increased to 20/40 in his right eye and 20/60 in his left with his glasses on. Because of the difference in acuity between the eyes, he is now on a patching regime of 2 hours per day. What this does is cover up the better eye (patch) to stimulate the lesser eye to work harder and hopefully the gap will decrease over time. That's all I really know at this point. Next appointment is Sept 24th when we'll learn if the patching is working.
Logan on June 1st, 2013, sporting his new specs. Photo taken by Jennifer Stogowski of Jen Stogowski Photography.
