Monday, April 11, 2011

When the impairment becomes an impairment

After hearing that we were regressing I went ahead and got all of our specialists visits scheduled and out of the way before May/June/July hit. We would really like to move and trying to get all of them in wasn't going to work. This was the first really major appointment that we have had since being pregnant. It is a big deal because we have hit a critical point and holding/lifting and doing what I usually do isn't an option.

This appointment was one that I have actually canceled and rescheduled 3 different times because it can be SOOO traumatic for Tyler. It generally hurts him. They have to pry his eyes open. It makes him very anxious and he gets so much overload. Ty hasn't ever had a chance to use his speaking skills with them them because he JUST started talking sometime between last appointment and now.

First up is the aide. He use to use card that they would watch what he saw. Today Ty held the card and told them what was on it. The objects are black and white and sort of stick figure like. So the Car looked like a boat and the hands looked like flowers. But if he was consistent with that name of the object then this card would work. When Ty got down to smaller ones he would get closer and then look at me waiting for me to prompt him with what it is. It broke my heart.

The next part is the actual Eye chart. When sitting in the eye exam chair you see the screen in front of you. This was where I actually realized what the numbers on the card mean. Ty is ranging about 20/200-600. 20 means that at 20 feet the person can see whatever is ahead of them with acuity of 200-600. So 20/200 you see the LARGE E on the chart. Anything over 200 you see it but with less clarity. Even with correction you will not see it clearly.

While we sad on the chair Ty was asked what was on the TV screen 20 feet ahead of him. He couldn't tell you if ANYTHING was on it. He couldn't see the screen. At that point the exam had to turn to the holding of the hands, wrestle and pulls and pulls while avoiding family jewels.

We didn't need dilation this time so we were over. Dilatation is so much harder because it makes it so they can't see after and for a kid that is visually impaired it makes the day much much harder.

So the impairment of bad eyes has become an impairment. It was always been there. But now I can't give him the world. I have tried. Oh I have tried. I have made EVERYTHING work for him. Now he has to make it work for himself in a world that can see things MUCH more clear than he can.

He handles it like a trooper. I handle it like a mom. My heart aches. My resolve to NEVER have to make my baby go through that is EVEN stronger. Ty is a tough boy. He needs loving care . He needs to function. Those eyes, with the Swiss cheese holes and the right sided gaze is so sweet. But it is an impairment. There is no longer any denying it will impact something daily.

Words have been tossed around like functionally blind, legally blind and low vision for 5 years. For five years we have waited to see what one we would need to use. We now use all of those terms...

The impairment has finally become an impairment. One that has to have accommodations. One that will be there.... forever.

* photo was taken by me with Captured moments mark on it, if you want to use. Please as for original and I will be happy to send it to you!*


Cynthia said...

I'm sorry. My Mama heart breaks for your Mama heart. Bless him for all he overcomes daily and YOU for helping him have the best world and experiences he can. Every trial has a silver lining- I wonder what it will be for him?

I have a neighbor who is now pretty much blind. She told me that going blind was the best thing that ever happened to her because she finally learned to really SEE people. She can't rely on the outer trappings and so when she 'sees' you- it's what is inside of you she's looking at. She says it's been an incredible gift. Tyler will have a similar gift from God. It may not be what you wish for him (as Mamas we want to take away the pain) but it will bring him joy in life.

singedwingangel said...

Ok deep breath mama, he is here, he is beautiful and he is a joy to your life. It is only an impairment when we let it be. Like the above poster said he will make it work for his benefit and learn things about life we often miss because we are fully able to see. Sending prayers to you all.