1 How did we face the challenges you see?

"Your son may never become know you is his mom."

"Cortical blindness"

The doctor in charge explained the condition of his son, who survived hypoxic encephalopathy, in a few words.

Actually, of course, it was a polite and detailed explanation, but it didn't come to my mind.

I can't remember how I was with my son, who was supposed to be awake from anesthesia but didn't open his eyes, for the next few months.

My son was a "medical care child" that was rarely seen at nursing centers at the time.

The number of children with medical care who had difficulty seeing was even smaller.

I was frightened by the words, "My son may never understand me his mom."

I didn't have to be pessimistic like that.

"you can't see" means not "you don't understand".

My son received  the warmth of the hands that touch the skin, the feeling of being hugged, the voice of people, the smell, the sound of footsteps, the vibration, the voice of birds, the sound of the city, etc. at full throttle and gradually deepened his understanding over a long period of time. It must be.

Rehabilitation was a trial and error process.

My son, who had a short awakening time and had a fluffy trunk and neck and poor response.

Still, ten years later, He started to move his limbs a little while being nervous and laugh aloud.

Speaking of eye condition, mydriasis remained dilated even when exposed to the light of a penlight.

"It seems that he can relax in a little darker."

"Indirect lighting is good"

"Practicing pupil contraction by shining light from a penlight."

I got some advices and tried it.

And after nearly a decade, his pupils have became a little smaller in bright places.

I was very happy. I started showing intentionally something that could help him grow.

However, the change in less than 10 years after that was not significant.

Even though he worked on various subjects that seemed to be interesting, it seemed difficult for him to connect touching and seeing.

It was thought that this was not only because the fingers were weak and there was almost no movement of the arms, but also because there was a problem in seeing.

We repeated trial and error, including returning to the way we came, until his eyes, which felt the light, reacted firmly. 

He couldn't improve "seeing" very much, but he was able to take on many challenges with volunteers at home.

Through the pool, horseback riding, and activities of the Sophia University Wakatake Circle, he was able to gain many irreplaceable experiences.

After his graduating from the school for specialneeds and going to a facility with severe physical and mental disabilities, I felt that his facial expressions and voices were getting richer.

While secondary disorders such as scoliosis progress, I was happy that there are some areas where he can grow even as an adult.

One time, I moved my hand in front of my son's face.

My hand quickly approached his face.

Then he closed his eyes immediately.

I was surprised. Once again, I quickly brought my hand close to his face. He closed again.

I also confirmed that it was not because of the wind.

It's been 20 years since he was sentenced to cortical blindness!

I was skeptical, but I thought he might have been able to see a little, so I decided to move forward.

Imitating a communication board, I made a transparent acrylic board with red squares and blue squares side by side.

I tried to see if I could get his eyes on it.

I wasn't sure about the result.

I noticed that the exotropia of his left eye was more advanced than before.

After that, I searched for the word "eye gaze" and found something called "eye gaze technology".

I learned that the sensor can not only pick up the eye gaze, but can also use the eye gaze to send things like click signals to a Windows PC. 

I knew that this was worth the effort even if it didn't work.

I hoped that eye manipulation could be used as a means of expression for my son.