Take time to see progress

I have told a few people about my blog lately and had to say that I haven't updated in awhile. Trying to make excuses for why not, I found myself saying that not much had changed and you don't want to hear about the same frustrations over and over again, it gets annoying. 

But someone posted about their anniversary of diagnosis day, and it made me look up mine, because I didn't remember what day it was. December 5th, according to my journal. Then I started reading. It's interesting reading what my feelings were back then. I was heartbroken, yet still held a lot of hope that she would get better, that things would change, or at least not be as bad as blind. Blind was the worst possible thing ever! (Which is totally not true but in my mind then, it was.) My heart healed quickly as Maggie wrapped us around her tiny fingers. 

Brandon and I used to pray everyday for a miracle, for her sight to improve, for things to change, basically for us all not to have to deal with this. I haven't prayed for that in a few years now. 

I read through old blog posts, seeing how much she's grown, physically and otherwise. How my worries and frustrations have changed and evolved as she learns new skills and develops new quirks. And I see how much has changed in the last year. 

This time last year we were having interviews with her kindergarten teacher, aide, TVI (teacher of the visually impaired), and the principal. Maggie struggled so much with change and with things not going her way. She would throw monumental tantrums that interrupted the whole class, and usually made it so she would have to be manhandled to the resource room so she could take the 20 minutes necessary to calm back down. I can't tell you how many times I was called to come pick her up because she wouldn't calm down. Being around her was exhausting. 

We just had parent teacher conferences the other day. Her teacher had so few complaints I was almost in shock. She kept apologizing because we didn't really have anything to talk about. Maggie has always been smart, so academics are not what we focus on, she loves to learn and has a mind like a super sponge. Not the normal sponge that every kid has, but a super sponge. I think she's bordering on an idetic memory for which I am so thankful, because it will make her life so much easier. 

Maggie struggled a little at the beginning of the year, getting used to routine and lean ring how to handle the changes coming at her. Overall though, this year has been amazing! I pick her up from school and she tells me all about math and how her friends played with her on the slides and how she loves adaptive PE. Mrs. Thelma, Maggie's aide, that is one of the most patient, kind, and loving people I've ever met, tells me all about how well she's handling things lately. 

I am so grateful to be able to see progress. It's been slow, as I suppose progress usually is. But to be able to look back and know that my stress levels are so much lower is so relieving. And it's really nice that being around my daughter is no longer a constant trial of patience and my ability to stay calm.

Things change and get better. I promise. And when they do, make sure you take note. And thank God. He's helped you out a lot along the way. 

Stacking blocks

All through the growth and development of you child there are milestones they're supposed to be hitting, proving that they're "normal". I'm not sure where they get these from but from talking to lots of moms every kid is different so I don't know why we all try to judge them against each other. However, comparison is in our nature, so we'll keep on keeping on comparing. 

I remember being so frustrated when Maggie wasn't hitting some of the milestones. She's supposed to be able to tie her shoes and jump on one foot and know the alphabet. Luckily, she loves learning, so the alphabet came easily and early. It's nice when your kiddo gets something down pat, and you can really see the progressing. 

Another mom once told me that it's ok if they never learn to tie their shoes. Just get slipons or Velcro. Nice. And when are you ever going to need to jump on one leg? Never? Ok, cool. 

Somewhere before one even they are supposed to be able to stack block. Sigh. Maggie just did not get that one. I'm not sure what sensory information she was missing to make the connections, but it did not come. 

I know she's been able to do it for a while now, but it really made me feel happy when I came down from putting Brooks down for a nap to find that Maggie had searched for and found a toy to enjoy. And then that it was block stacking. And she's good at it now. Yea, she's almost six, but I know that if I give her time she'll figure anything out on her own. 

Sometimes I cry

Unproud moment right here. But my excuses first: 

I'm tired. I was up til 1:30 as one of my best friends had her baby. I was there as support and photographer, but this being my third birth to photograph, I think I'm going to train to be a doula. It was amazing and exhausting. I loved it. 

Brooks is in the terrible twos now. He's so amazingly good at throwing tantrums. He screamed all the way to Maggie's school because my husband buckled him into his seat, not me. Sigh. So much screaming and whining. 

So he's finally down for a nap and I get up from dozing on the couch to get Maggie off the bus. She's happy and excited about school, despite not having a great day. I'm not sure our form of discipline is working when the first words out of her mouth are the ways in which she didn't behave at school, but to visit at another time. 

She plays with moon dough for 15 minutes or so to unwind and we dive into "pretend school" aka homework. This is kind of fun, because she has different kids in her pretend class. They even have different voices! She raises her hand at the beginning of each math problem so that I can call her a different name to answer the question. 

It's pretty fun until I call her Maggie. There is no one named Maggie in room 20 (her pretend classroom). I must call shoes foot coverings and hair is fur and only girls with two syllable names are at the math table. So stop calling on Angelina, Mom! For reals?!?!? 

I lost it today. I kept forgetting to call her by a pretend name, called the braille writer a brailler, and mentioned a one syllable name. There are NO one syllable named people around here. She corrected me every time with this whiny haughty voice. How could I possibly forget these simple rules of pretend school? 

We had a shouting match and both cried which lead to more shouting. We're ok now. After I explained why I was upset. And she asked me nicely to please try to remember to call her Miya. We both apologized. She just finished her homework and now we're off to make banana bread. Hopefully I can handle the stress of this impending mess and make it a good time spent with my daughter.

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.