Here's to redefining "perfect"

Maggie's TVI called today, telling me all about a symposium she had attended last week. It was on ONH and spoke a lot on the behavioral effects that tend to come with it. Most children with ONH are also on the autism spectrum or at least exhibit behaviors similar to those with autism.  Sigh. I have been thinking this for a long while, that Maggie may be autistic. Since I'd been thinking it, I told Laura it was fine, she wouldn't offend me and to please give me all the information she could find. After the wonderfully informative and overall positive conversation I called Brandon and broke down. 

Having someone else confirm those thoughts was gut wrenching. I know it's not changing anything. She's still the same person she was before someone said the "A".word. But to my mind came all the sigmas we attach to the word autism. All the judgments and stereotypes. All the intensely negative things. 

When I was pregnant with Maggie I had this picture of my daughter's future, bright and shiny and perfect. When I found out she was blind, that perfect future came crashing down around me. She would never be able to do all those things I wanted her to experience. She would forever be dependant on other people. Slowly I put the picture back together. It wasn't ruined, it was just a little different and spattered with a few more difficulties than the "normal" life I had dreamed for her. She would still be able to have amazing experiences, and she would still live a full and beautiful life. 

Today felt the same. I had my pieced-back-together picture of Maggie's brilliant, fabulous future, but now she's got behavioral issues that tear my picture apart.  

I thank God for Brandon. He's so stable and rational. He knows how to calm my fears. Nothing is different from this morning. Maggie is still stubborn and has some quirks. She's still got that same dazzling smile and sense of humor. She still has an amazing, marvelous future ahead of her. Now that we have an idea of where to head, Brandon and I and Maggie's teachers are going to do a lot of research. 

I got off the phone with Brandon and listened to an NPR podcast (Invisibilia-How to Become Batman) on how our expectations can effect those we interact with. The main focus was on a man, Daniel Kish, that learned how to echolocate to compensate for his blindness. He grew up with few restrictions and his mother felt that if he didn't experience the falls and bruises he wouldn't learn or grow. They explained through the episode how sighted people disable the blind with their help. By having the expectation that "a blind person can't do that" we take away their opportunity to see if they can. 

How do you know I know if Maggie can or cannot do something? I don't. I have to let her experience things on her own, and teach her how to do things on her own. I cannot lead her everywhere and bring her everything she needs. She's already so independent, it honestly makes me crazy. She wants to do things by herself and will NOT let anyone help her. I love it, and hate it. I know that the mentality will help her go far. She can do anything.

What we do for fun!

Trying to keep Maggie involved in all that we do is sometimes difficult. Here are some fun things she's been able to experience lately. 

Splashing in fountains

Building marble runs. She was so thrilled by the sounds of the marbles going down she couldn't hold still. :)

Playing the piano 

Stamping. Sometimes the messes are worth it. Unfortunately that may depend on my mood. I need to be more flexible. But at least she gets to be crazy messy sometimes. 

Giving and getting high fives

Loving kinetic sand. Seriously, it's amazing. Also, the cute owl hat with button eyes! She loves it. 

Playing baseball. Or playing with a baseball at least. 

Threading Pom Pom balls on a long string to make a garland. Nice and time consuming. :) I need to find a duller needle, but she only poked herself a few times before she got the hang of it. 

Making biscuits. See I do let my kids get messy sometimes. I feel better. 

And really I'm just grateful to have my wonderful kiddos and to be able to help them explore and discover the world. 

Homework for mommy

I know most kids' homework, especially in the first few years ,requires lots of help from parents. But sometimes I think it gets a bit ridiculous. Luckily today I had time for and enjoyed the ridiculous.  I'm still getting the hang of the slate and stylus, so things don't end up where they're supposed to on the page. Oh well, Maggie will never know. And she had fun with the stickers!

Control issues

Maggie loves to paint. Usually it's not paper she wants painted, but things. Small marbles or glass vase fillers (aka pebbles) or golf balls or bottle caps like you see below the baking tin. I could not understand why she had this need to change the color of things when she doesn't even really know what color is. 

Now this is just speculation but knowing her personality I think I'm pretty accurate, but I think that she wants to have control. She wants to know she can make things just that certain way. 

And she does it every day. I no longer bake with this pan because it is used everyday to paint in. Sometimes she'll use a paintbrush, but it's rare. Normally Maggie is hands in all the way or rolling it (the marbles and golf balls) around the baking pan making as much noise as possible. 

We've established that I don't like messes. This one doesn't bother me much. Maggie does a good job of keeping most of the paint in the pan. And it entertains her for at least 10 minutes. That's a long time in mom world. 

Plus I want her to have those successes in life. When her opinion matters and is respected. This also lets me get my way other times.  A five year old can not have their way more often than me. That's teaching patience right? 

Or am I just needing my own times to be in control?

Hidden Frustration

Maggie loves to do things herself. In fact, in her mind she NEEDS to do things by herself.

Example A. This morning she wanted an english muffin. She was already seated at the table and had her milk and cereal, which came to the table in the wrong order and caused screaming. Sigh. I cut the muffin in half, placed them in the toaster and pushed down the lever. She hears the lever go down. "I want to do it! I want to make the english muffin!" she screams. "Calm down and hurry over here then." I say and push the up button so she can come pull the lever down herself. She gets to the toaster, which is not a quick process for my little blind one. It takes at least twice as long as it does for my son. She has to climb out of her booster seat, find her way around the table and into the kitchen. Doesn't sounds like a lot but those little things add up and we're on a tight schedule. She realizes the muffins are already cut and in the toaster and just melts down, crying about how she needs to do it. I cannot uncut the muffin so that you can do it. Even if I could I wouldn't. It's ridiculous.

Example B. There are more incidents than I can count of Maggie wanting to get her own toilet paper after using the potty. Great! Yes! Please, learn how to do this all by yourself. The toilet being full of paper because she doesn't realize she's unrolled it all is more than a little frustrating. And gross. She's been put on time out from getting her own toilet paper on multiple occasions.

Example C. We are making cookies, which she thoroughly enjoys. And I love that she likes cooking. So I find ways and things she can help me with. She loves the measuring and pouring and mixing.  Maggie touches, and sometimes tastes, each ingredient before measuring and adding it to the bowl and turning on the mixer. After the dough is all mixed she LOVES snitching some, especially when we've added chocolate chips.

It's so adorable and such a neat experience for her. A part of me hates it.

I really dislike messes. Now, don't expect my house to be all clean, because it's not; but in certain things where I can contain the amount of mess made, I like to do that. I need to do it. Painting should remain only on the paper. I hate sidewalk chalk because it get's all over your clothes and body. Craft supplies need to remain in an orderly organized fashion so that everything can be found and appropriately utilized. And I want clean counters while I cook.

This results in a very uncomfortable experience for me while cooking with Maggie. I want her to learn and enjoy it. But my chest tightens and my throat constricts with every egg she gets half in the bowl and half on the counter and every grain of sugar she spills on the floor. Every time she puts her hand into the flour container then pulls it out and brushes the excess onto every thing around her I want to scream. I usually have to stop for a second during some part of our cooking time to remember to unclench my teeth.

In her efforts to feel and experience what we're doing Maggie's small adorable hands inevitably get into something gooey or just in the way of me seeing what is going on and getting things situated just so. I don't want to feel this way. I don't want to be so physically angered by her need and desire to experience life and to do it her way and by herself. So I keep it in. I walk away when I need to and I have my husband help her finish up whatever was bothering me. I can't let my anxieties stop her from learning and living.

I will continue to work hard at enjoying our experiences and at helping Maggie to learn and understand that there are times when it's ok to let other people help you. I need help sometimes too.

Helping hands

One of those things every parent worries about is the independence of their children. Will she ever learn how to get up at night to go to the bathroom? When will I get to stop badgering him to put his dishes in the sink? Please let her just get dressed by herself today. Why can't he stop biting people?!? I don't think his college roommates are going to like that attribute. And please PLEASE make her stop screaming when I put her milk into the wrong cup. This too shall pass. In the moment it doesn't seem like it will ever pass.

There is a special heap of worries that come with a special needs child, with blindness offering it's own difficulties. When will she learn to put her hands up so she stops hitting her head on everything? When will she be able to find the bathroom by herself so I don't have to be with her every step of the way? When will she learn how to use a spoon without spilling food ALL over? Why can't she seem to remember where the toy chest is? It's been in the same spot for months.

Today I got a glimpse into that future of not having to worry. I ran up the stairs for a quick two minutes in the bathroom by myself, to discover that the toilet paper was out. Why do we keep the extra in the hall closet? I don't know, it seems a little more than inconvenient now that I think about it. I was able to ask Maggie to get the a roll of toilet paper.

She did it!!! Out of her room, across the hall, opened the door, found the package of paper, got a roll, then brought it to me in the bathroom. Monumental achievement here. What incredible independence she displayed and an ability to accomplish multilevel tasks. I am thrilled!

Sadly, this feeling of accomplishment also comes with frustration and a sense of injustice. This is something I could have asked my son to do. If the closet door was open he could have done it too. He's not even 2 years old and can only say like 15 words.

Why? Why are such simple things made so difficult for my daughter? Why does she have to work so hard for things that are so easy for a toddler? Maggie is such a smart, capable girl when given the opportunity and taught how to do things.

I know God has a plan for her. I know that Maggie has a lasting effect on everyone she meets. I know that she will move mountains when her time comes. She has such conviction and strength when things matter to her. We work, really really work, to make sure that Maggie knows and understands how to be a kind, humble, helpful person, and I know it will pay off. It's just hard to remember that. Because it is hard work. Hard, frustrating, seemingly unrewarding work.

Then one day you don't have to run down the hall with pants around your ankles to get your own toilet paper, because she's learned how to help you.

Buttons on ALL the things!!!

So, new fascination - buttons. Cool. I like buttons too! I have a huge collection of them. 

However, she's refusing to wear clothes without buttons on them.  

Problem SOLVED! And I put them along the bottom hem so she can play with them during school but not cause too many distractions. 

Maggie really enjoys picking which special buttons will be on her shirt. 

Something I find interesting, she really wants her clothes to match. So she's careful to make sure the buttons match her shirt. 

She already favors neutral colored pants because she knows she has more options in what shirt she can wear. Smart girl. :)

She also takes special pride in being modest. She doesn't want anyone to see her panties. Tights are a must on Sunday in case her skirt comes up. Like, we've had multiple power struggles on hot days because she just HAS to wear tights to church. The compromise was lace hemmed shorts.  Yay for compromise. 

I feel like it's my life now. At least I get my way sometimes...