learning to navigate the world, j-bear style

Tag: glasses

A Little (In)Sight

I cannot remember the first time I noticed it with exact dates or times. I only remember that he was very, very small. Newborns do not focus their eyes well, but babies start to. Toddlers assuredly do so even better, yet somehow, J’s right eye was always seeming to turn inwards. It was typical of me though to constantly question myself. Was that really happening? Was it something to be concerned about? Growing up with a lazy eye myself was on my mind, so I kept watch on it.

Last year, it grew more obvious. He was definitely dealing with something in terms of his vision. The strangest part was this child has never missed a beat in terms of picking up on visual stimuli in his environment. An issue that truly affected his sight to any measurable level was not the first thing that came to mind, strangely enough. He was and is a very visually stimulated child. The journey began to figure out why this one eye decides to do its own thing.

Our first visit to an ophthalmologist was horrifyingly bad.  The woman advertised herself as working with young children and people with disabilities. She claimed to be a developmental ophthalmologist too. This should have uniquely qualified her as someone able to work with a kid like J.

Nope. Nope. Nope. Nope.

She was a nightmare. She was impatient with him, he could not settle in her office and I spent the entire appointment chasing him around to try to settle him while she complained about his lack of cooperation. I’m sorry, but when you’re about as personable as a cactus you’re going to get what you give. She charged us a stupid amount of money for the privilege of learning nothing we needed to know. I was angry and discouraged.

Then we went to the pediatric ophthalmology department at Floating Hospital. This was a whole new world! The techs that work there have a truly golden touch. Our first visit was not perfect but it was good enough that the doctor could see that there was something there, something to be kept watch over and something to try for better assessment of in the future. She did not dismiss us nor did she push J so hard he was in hysterics by the time we left. She worked with him, not against him, his best interest firmly at heart.

That first visit was in December. We were newly home with Brooklyn so her place by his side was not as solidified. She was there for him at the appointment but it wasn’t what it could be. Flash forward to late April…

Perfection. Absolute perfection.

J walked into the office without a fuss. He attended to what the doctor asked him to do, no coaxing from me. I assisted with directing him to reading the board across the room but little more than that. She got an excellent read on what exactly he could and could not see, plus what his vision needed. This visit the crossing of his eyes was very, very clear to her as well. Brooklyn stayed nearby and kept a watchful eye over her most calm of boys. He struggled having his eyes dilated but that was expected. Once the drops were in, his good humor returned and he did just such an impressive job with the rest of the visit.

two pictures together

I cannot even get over the cute here folks.

Trying on glasses was a hardship but he did it. He now sports some dark blue Miraflex glasses that can withstand his level of activity and just general J being J. He has taken to wearing them much, much better than we all expected too. The entire team (doctor, therapists, family) had a plan in place with a back up plan for that plan if he rejected the glasses. They have not been needed yet. He has truly, truly impressed all of us.

The amazing thing is hearing him speak even more about what he sees. Let me tell you, he sees everything and is fascinated by it. Most parents enjoy their children detailing the world as they see it at a younger age… I am so excited to be hearing it now. Car! Truck! Bird! Helicopter! Clouds! … His observations are quick and cheerful. He loves the world around him, so very much.

And every dog is Brookie.

It’s another new little chapter in our great adventure of life adding glasses to his world. He is adapting, he is growing and he is continuing on his own amazing course. It is not always easy but it is the successes that come, like this one, that make any pitfalls seem so very small.

Farsighted, Perhaps

We managed to finally get J to a fantastic ophthalmologist last week. When I say fantastic, I feel the word falls short. The New England Eye and Ear Clinic at Floating Hospital for Children in Boston is stupendous. Their technicians get it. I mentioned he would struggle and the tech that assisted us put things immediately at ease by stating you don’t work with children if you aren’t ready to be patient.

Can we clone her attitude and transplant it to those in need? It was that amazing.

Anyway, between her and the wonderful doctor herself, it was determined that J is definitely farsighted and that might account for the strange crossing of his eyes we see. That’s him straining to focus on that which is close. We all do it to some degree when things are very close to our faces, he just happens to do it to things slightly further afield. It’s been clear since his earliest days that his distance vision was good. This child can spot a favored item what feels like miles away. We’ll be on a highway and he’s noticing school buses on side roads nearby, something we’d miss without his pointing it out. We are now noticing more at home how this likely has been the case all along as we see a few of his behaviors in a whole new light, like how he walks away from a new item to study it before coming close and taking it up.

The hard part of this is whether or not he will need to wear glasses. The likelihood is high that he will need to wear them at some point but since his eyes were dilated at his appointment he was having none of being cooperative with the doctor as she did her measurements. She got some measurements, but not enough that she felt confident in prescribing lenses. He will return in a few months for a follow-up, along with ourselves armed for potential repeat of the dilation issue, and we will see what she says.

It is a relief that there is nothing severe going on with his eyes. It is so hard to tell what is serious and what is not when it comes to health issues and J. He can’t tell me if he’s having headaches from eye strain, and people blow off certain behaviors as just part of his autism and sensory processing disorders. I feel that wrong and unfair. Just because he’s autistic and has SPD doesn’t mean that there’s nothing else possible. It just means sometimes it’s harder to tease out as  you’re lacking his ability to describe symptoms to you. We have to go with what we, who are outside his body, see. I am grateful for at least one doctor on his team who takes concerns seriously and doesn’t immediately lump everything up to behavior and autism.

If and when he does get glasses, be prepared for a lot of yelling from himself at the indignity of having to wear the silly things. We’ll see how that turns out.

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As an aside, Brooklyn was with us at the appointment. She laid on the floor through most of it, appearing to do little… It’s worth observing however that we rarely have gotten J into this hospital without a fight at some point. We have now, with her help, gotten him in and out 3 separate times with only mild incidents caused by outside forces rather than a true resistance/fear on J’s part. Amazing!

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