How do I raise my child?

A Mormon family in Utah has been putting their son’s journey of a terminal form of Muscular Dystrophy. The boy, Mitchell, was doing great. But quickly his position changed and they found that his disease was killing his heart and fast. While working on getting an LVAD, they documented his last  few weeks, and ultimately his last few days and hours. His father documented the journey in amazing and heart wrenching photographs. What I wonder, was how this mother was and did, raise her child knowing and teaching him about dying? How did she do it with strength and dignity? Of course, I wasn’t there behind closed doors, but the questions still looms, how do you raise your child to die?

Today we had an opthamologist visit for Tyler. We truly do love our eye care team and Tyler, especially, LOVES his vision therapist and teacher at school. He calls her Jenny the Pirate. We had a terrible, TERRIBLE visit with an optometrist ( there really is a HUGE difference)  a few weeks ago but we knew that we just needed it for a  few things at school. But this doctor, Dr. S, is different. He is a retina specialist. He deals with ROP and kids like Tyler. He is very good and very through. He is also very bold and very honest. He never sugar coats things and we are able to get good information for what we need.

Tyler hit a growth spurt the last few months. He really has put on some weight, and grew bigger. While that is a blessing for us, it has wrecked some havoc on his body and his conditions. One thing I didn’t expect was that his eyes would be affected by him growing. This recent growth spurt has caused him to  become more near sighted. We knew that as he got older that he would have a harder time seeing. But I thought when he was 18 or 19 or older. Not 7 or 8 or even 50. The reality is, I never thought he really would get “worse.”

His script went from -13 to -16 in a year. Correction doesn’t correct his vision to even legally blind. He is amazing at compensating and he has great “functional vision.” We have done all that we have known to do to keep him seeing. We make sure that his ability to get what he needs is done. But we do not know how to stop or slow down the progress of his ROP and his nearsightedness

(This is what 20/500 vision is. Tyler has this picture WHEN CORRECTED!! So WITH GLASSES)!

For Tyler, we still see the opthamalogist every 3-4 months. They are still worried about his retina’s detaching and him going totally blind. The older he gets, the better he will be at telling us that something is wrong with his eyes but ultimately it will be with the follow ups that we catch it as early as possible.

What hit me hard, was how do you raise a child to become an adult that will not be able to see?  How do you teach him about all the wonderful things that there are in the world, yet he sees none of them? We are teaching him a song about all of the wonderful things that Heavenly Father has given to us, yet he is denied seeing them?

For today, I am sad. Today I look at photographs taken from amazing people, who see and takes photos of amazing things. I want to pack them all into a short time so that Ty  can see EVERYTHING. Experience everything. Even with the  limitation physically, I want him to see everything he can. I don’t want him to lose what vision he has.

What I selfishly, don’t want him to not be able to see, is me. I am selfish. But he is my baby. I want him to know who I am.

How will I  raise my sweet, amazing, miracle to grow up blind?

CLVE

Clinical Low Vision Evaluation. 

That is what we did the week we were getting better from the Flu. And the truth is, it was NOT very fun and I left feeling so down that I spent part of the evening in my bed crying.

So the CLVE was set up through the Foundation for Blind Children of Arizona. We went to a location that was LOADED with as many snow birds as could fit in one location. They were all trying on canes, and getting equipment and stuff for the Macular degeneration and glaucoma. Instead of books to read, they had CCTV’s available so you could read the magazines that were left on the counter. The wall was filled with AS SEEN ON TV keyboards. It was a blind persons dream.

Ty was totally cool with the CCTV’s and we read a few books we brought with us. I filled out the countless pages of paper work and his vision teacher came to met us. Her name is Jenny. Tyler calls her Jenny the Pirate.

To make sure that Ty was at the top of his participating game, we kept him home from school. He had only gone on Wednesday and Thursday because of the flu. Ty had a low low key day, and he was properly bribed to participate.

So what is a CLVE, well we sure as heck didn’t know. So this is what we learned.

1. Intense background and medical history of the patient. In this case we actually struggled to get our doctors in Utah to provide us with a detail of ANYTHING. They just switched doctors and it was a real struggle so we went off the last detailed list of stuff that I had sent to school. Which in fact, was NOT what I had actually sent to school but lesson learned for me. Keep a better record. 
2. Depth perception, color testing, contrast of color, light sensitivity, ability to process what they see. While that seems like a lot, most can be done in a series of a few tests.  He did really well and they were very hard for him to do. When things get hard for him, he does a few things that signal to me that we are going to meltdown soon. 
3. Eye exam with the big chart. Ty does really well with these. He did what he could and then the sadness and meltdowns came into play. 
4. A lot of the rest of the appointment was what was Tyler like in a school setting, home setting, a situational setting. This is where it gets more and more frustrating for me as the mom. They also talk about future goals, things that will be happening and things that won’t be happening. Things that we can see as progression and things we can see as he gets older and things that we can expect as he gets older. 

The purpose of the CLVE was to get a specific piece of equipment that can go with Tyler throughout school. It will enlarge his papers, allow him to write, and also allows the computer to help him read when his eyes are to tired to continue to do so. Right now, he is minimal things that require long term memory to read, so it isn’t as much of an issue. But later in life, it will be. Especially when chapter books and texts books come into play. For now he needs basics, but he needs something basic and then some. 

Ty will be getting a Davinci CCTV for his class and it should follow him through school at the district. We are pretty impressed with the Davinci and really like it. It has way more features than he needs right this second in time but as he grows older he will need what it has to offer. 

We have found he has a severe sensitivity to light and should be wearing sunglasses, but transition lenses don’t come in his prescription and getting him to willingly change into sunglasses is a joke. And because his vision is crappy even with correction, he fights us to even wear those. 

His eye sight with correction is still really bad. He is known to have about 20/500 vision. That is REALLY bad. The picture below is what he sees even with correction. 

For now we work with Jenny, the pirate, Tyler’s vision teacher. She helps everyone enlarge everything and make sure that it is in the size he needs and how to help him do better. 

Ty doesn’t notice he can’t see, He pretends he can. People don’t realize he can’t see. We are trying to accommodate him in every way possible and to help others adapt to him in whatever way possible. My calling at church is his teacher, which has opened up a dialogue with the Church’s disabilities department to get some better visual impairment products and books. We are also trying to figure out what we can do to provide him with the stuff we need here at home. 

So don’t get to alarmed when he doesn’t know who you are or he wants to touch you or comes up really close. He is super smart and will remember who you are. He is also learning to get to the park on his bike with no help ( of course he won’t ever be able to go without someone following him because he can’t see cars coming down the street!) but he is doing really well navigating in a world that was not meant to be seen in the dark. 

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!*

The Blind Driving

When you are pregnant and have a kid you dream of all the milestones that will be coming in the next 20 years. One big one is driving, drivers ed and your first car.

Ty has nystagmus and ROP. His ROP is severe. Though it didn't leave him totally blind he has severe vision loss. His script borders legally blind. Even at 4 we don't know the full extent of his vision loss. The nystagmus doesn't help. Because of the movement it makes LOTS of problems for the vision. It makes it so that driving is almost impossible.

Recently, an article and news story came out about a car that is being made by Virgina Tech that is giving hope to the legally blind. Giving them a hope for DRIVING!

With a new technology called "non digital interface technology" people with vision impairment and blindness have been able to drive.

It uses a series of vibrations, signals and sounds to tell the blind person where to turn and how to stay away from other hazards in the street all while driving. The foundation for blind people were impressed with the showing at Daytona last week. A prototype vehicle is going to be made by Ford using a Ford Escape which will be equipped with the new technology and will be shown in January.

I think it is rather interesting and I wonder in the next ten years what technology will be coming up that will help kiddos like Tyler. Can you imagine the independence he will feel with the ability to drive!?

Can you imagine the possibilities?