Thursday, December 10, 2015

What Most People Don't Think About

When you have a child with any sort of special needs, there are things you have to think about that would never even cross your mind otherwise. Since becoming mommy to Charlie, I've found that I now think in a different way. The things I think about are different than other people.

For example, the other day we were driving down the road after dark. We were stopped at a light, and Charlie started pointing out the window and yelling excitedly, "Mom! A pumpkin!! Mom! Pumpkin!". I looked out the window to where he was pointing, and I searched for the pumpkin. But it's December, and there were no pumpkins in sight. Then I decided to try and see things from his point of view, so I squinted my eyes to blurr my vision and I looked around again. This time I noticed a building with three downward facing lights with orange-tinted bulbs in them. The orangey light that was cast down on the side of the building formed a sort of round ball. With my eyes squinted, I could see how that ball of orange light could look like a pumpkin. So I explained to him that it looked like a pumpkin from a distance, but it was actually just a light. If we had been able to get up close to the building, I would have taken him right up to it to look closely at it so that he could see what was making that shape.
Every single time he thinks he sees something from the car or out our window or on the TV, I have to try really hard to figure out what it is that he's looking at and what about it makes him think that he's seeing what he tells me he's seeing. Sometimes, like with the orange light and the pumpkin, I can figure it out. But I'm still learning to try and see things the way he does.

Other things that I think about on an almost daily basis:
Every day I try to come up with a new sensory experience for Charlie. Children with vision impairments generally have other heightened senses like hearing, touch, and taste. Because of that, Charlie has some sensory aversions. Playing in the corn-boxes during the fall, for example, is a nightmare for him. Also, if he falls down in grass, he won't use his hands to help himself up again because he refuses to touch the grass. Same with snow. He loves play-doh as long as I use it to form a road, and then he can drive his car on top of a road. But he won't actually touch the play-doh.
Everywhere I go I take an extra pair of sunglasses for him, a hat, and sunscreen.
Every time we get in the car I think about where we are driving and which direction the sun will be coming from. Then I try to position Charlie as far away from the sun as possible.
At every meal I pick out a bowl or plate for his food. And then I pick out a utensil. But I can't pick just any utensil, I pick out one in a color that contrasts the color of his plate or bowl. For example, if he has a green plate, I try to pick out a red spoon. I think this is more me being crazy than Charlie actually needing it, but if I pick a green spoon for his green bowl, I worry that he won't be able to see it. One day we were playing outside and I threw a green ball to him and it landed behind him on the green grass. He turned around and scanned the ground for a minute, and then he actually found the green ball! I know it's a really small thing, but that was a very proud mommy moment for me.
When we walk into a restaurant, or go to any new place, I check the lighting to see if I need to put darker sunglasses on Charlie or if there's a better location for him to sit or play.
Whenever we go on walks or to a new place, I try to remember to grab his cane.
While walking outside, I have to remind Charlie when we are approaching a curb, a bump, a drop off etc. Even changes in color or texture can throw him off in unfamiliar environments.
When Charlie asks where something is, I am having to retrain myself to not just point and say "over there". I need to say "it's by the toy box" or "under the chair". That also poses some more difficulties, since he doesn't understand most directional words yet. We are trying to teach him "under" "behind" "inside of" etc.
We have so many therapies, toddler groups, doctors appointments etc. to keep up with. I've had to resort to a much larger and more visible calendar to keep track of it all. He has therapy 3x a month; toddler group (with other visually impaired children his age) once a week; visits with the Geneticist every year, Ophthalmologist every 6 months, and the Dermatologist (for cancer screenings and eczema) every year.
I also have to think about not favoring him. Not that I love him any more than I love his sisters, because I don't, but I find myself wanting to go easier on him. Wanting to help him more than I help them. It takes a conscious effort on my part not to do that.
Then there's trying to figure out how to respond when people comment on his hair. Sometimes I just laugh and say, "He is very unique." Other times I mention that he has Albinism, which I nearly always have to follow up with "albino" for others to understand what I mean. Sometimes I just ignore the comments altogether. It depends on my mood and the situation.
Forrest and I also have regular conversations about how we can teach him everything we want him to know. Forrest wants him to learn karate or some sort of martial art, in addition to the basics of fighting so that he can be confident that he can defend himself if he needs to. I'm on board with that. We've also started a collection of books and movies about people who have overcome challenges to be successful. Some of the movies we've started with are Finding Nemo, Frozen (mostly because Elsa has white hair), Mulan, Meet the Robinsons, and Monsters University. Being a mom is a lot of work and a lot of pressure, but I feel some added pressure to teach Charlie that he can do anything he wants to do. He needs to know that there are ways to work around his impairment, and I am trying my hardest to give him all the tools he needs to be able to do that.
Additionally I think a lot about his future. Will he want to learn brail? What sports will he want to play? What if he chooses baseball? (I'm terrified that he will choose baseball, actually.) Will he be able to drive a car? (At his most recent eye appointment, his doctor said he thinks Charlie will be able to drive. YAY!!!)
I also think about ways we can develop his current talents and interests. Music in particular. I hope he will want to play an instrument, or sing, or do something musical.

I have learned so much since becoming Charlie's mom, and I'm so thankful for him and that my mind is expanding and growing in ways that I didn't even know it could. But as much as my mind grows for him, my heart grows infinitely more. There's something so special about Charlie, and I'm so grateful that he's mine.

1 comment:

  1. I have a niece, now 17, with special needs and her parents and I still worry how she's going to be an independent adult, but she's doing pretty well.