Comment by jylertones

I remember when my son was 3 months old. We had many concerns - he did not track objects as they moved across the room, he did not recognize me or my spouse whenever we had gotten a haircut or put our long hair up in a ponytail. Our pediatrician was dismissive because our son was sensitive to light. We pushed and pushed and got an appointment with a pediatric ophthalmologist. They were able to diagnose him pretty quickly with Oculocutaneous albinism because on top of everything, he was very sensitive to light.

The doctors we worked with have been amazing — he was fitted with glasses (he can see 20/200 with them on!). He had surgery for strabismus and for nystagmus when he was 3.

For whatever specific diagnosis you receive (if you receive one!), there are already a lot of resources for you. Occupational therapists are helpful to help meet milestones and adjust. When our kid got closer to school age, the school helped with therapists to take him on walks with a cane and even did pre-braille. Everything we've done is to foster independence in everything he's capable of doing. They took him to the grocery store with a monocular to help him identify things to buy. They helped find specific sunglasses that blocked out light. They helped with countless other things in his movement and activity that have allowed him to really excel in life.

For broader learning, one good starter resource is the National Federation for the Blind (NFB). They have regular publications that explore different scenarios of what it is like to live every day. Depending on your son's diagnosis this may be helpful, or there may be one more specific for your situation. For albinism there is the National Organization for Albinism and Hypopigmentism (NOAH), which is large and even has a yearly conference!

There are also countless Facebook groups and Reddit, which can be helpful to remediate daily issues, but also to get a really comfortable feeling for people who have grown up with blindness and what their lives are like.

My son is now 10 and for the most part, he's not really defined by his disability. He knows it's a key part of who he is, but he has figured out what works for him. He has to wear tons of sunscreen outside and cannot remove his sunglasses on a sunny day. He uses his cane sometimes, and decided not to learn braille. He sits at the front of his classes and sometimes needs something in larger print. He reads a ton, excels in school, and makes friends just like any other kid. He's really a joy to be around, and all the work that he put in when he was younger was absolutely worth it.