Thursday, July 30, 2015

Dramatic Human Experience, or A Typical Day

I've been watching the documentary, "The Human Planet" on Netflix. While I enjoy the glimpses into other cultures, as usual, the over dramatic narrative has me cracking up. It's no wonder we Westerners are xenophobic idiots!  

As a way to put this into perspective, I wrote a sample of dialogue using my own middle-class American family as the subjects of a similar documentary, trying to replicate the feelings these people must have when they watch the show about themselves and hear the narration about what to them is a typical day in a normal way of life.

"Matthew is a Pacific Northwest man living on the edge of survival in the Idaho wilderness. Every summer, he packs up his family to make the perilous journey down to the next river town. Just last week, two people died on this road when the conveyances they use crashed into one another. On the way, they pass fields of a crop they call 'wheat' that nearby farmers export to keep their families alive. 

By sheer luck, Matthew makes it with his children to the river town where they will trade his hard-earned currency for a rare delicacy they call 'chocolate chip cookies.'

While he is away, his wife desperately signals him with the primitive iPhone devices used by this people group that a tragic loss occurred at the community's water hole. One of the children has forgotten to bring home a tool they call a 'kick board' and may never learn to swim, thus losing this ancient tradition forever. 

Luckily, with ingenuity and the survival skills passed on from generations that went before him, Matthew is able to retrieve the board, and the family can keep alive this flickering flame of ancient culture."

(Another hilarious example: the documentary "Alaska: The Last Frontier" about the poor millionaire Kilcher family trying to survive nine miles away from a grocery store. I love documentaries!)

Saturday, July 25, 2015

Therapy Success

We just ate a meal with no battle between me and Abi. I can count on one hand the number of times that has happened in the past 3.5 years. 

Thank you, Dr. P!

I think another adult that she trusts telling her that eating food and using manners are important made a huge difference. We also did calm breathing as a family and I promised not to punish her if she slipped up and did something wrong. The huge difference in my thinking isn't that she did everything perfectly, but that she TRIED. Nothing I've done up to this point has convinced her to even try. When I sat with her and nagged her, she'd make a show of using her fork and chewing with her mouth closed. As soon as my back was turned or if I stepped out of the room, she'd smack, get her fingers in her plate, take either huge or tiny bites, try to eat as little as possible or not at all... the list of shenanigans has been endless. 

Having an adult acknowledge her terror of [punishment/noise/everything/life] and offer solutions was enough to get her to listen to the idea that her body NEEDS that food, and that eating nicely might be a good idea so other people don't think she's gross. Hmmm, good thinking!

I love that she has someone so wise in her corner. :)

The deep breathing didn't do me any harm either. I've become so tense at mealtimes, dreading the inevitable fight, that I'm sure I exacerbate the problem. It really helped to have a success tonight. I hope it's repeatable!

Sunday, July 19, 2015

Friends At The Cabin

We invited the two families that I fondly call "My Theater Friends" to the cabin. I met both families last fall doing Anne in the community theater. They are both social, laid back, have kids the same ages as ours, and best of all, say "yes" when I invite them to the cabin! Woo hoo!

Although we only had a couple of days, we managed to pack in plenty of fun. :)

Our family started out at the CdA beach with the Petersons (not theater friends, but good friends who live in CdA). 

Then, we headed on up to Mom and Dad's cabin, where the "Theater Friends" were meeting us.

There were the usual cabin-y things like skipping rocks. 

Riding bikes. Walking the dog.

Sitting around. 


Taking tubes to the river. Where else but Northern Idaho can you still ride on a tailgate for the 500 yards to the beach?

Tubing and swimming at the beach under the bridge. 

Therapeutic parenting. Yes, you do that on vacation too.

Celebrating a birthday. 

Enjoying these memory-making days. 

Thursday, July 16, 2015

Snapshot: Earrings

Curly bought two little charms at the craft store and made herself some earrings with them. We ordered a bunch of niobium hooks online that wouldn't bother her metal allergy. 

Wednesday, July 15, 2015

Living in the Borderlands

The absolute hardest thing about living with my vision condition is that I don't fit into any definition. 


Sighted: You can see. You use vision to gain information and accomplish tasks and enjoy sensory experiences. 

Blind: Legally, your acuity is less than 20/200 or your field of vision is less than 20°. You use vision if you can for some tasks, and when you can't, you use alternate non-visual skills, like Braille. 


I don't fit either one of those! 

So I talk to blind people, like a friend tonight at a meeting and they invariable say what he said. Why aren't you legally blind? If you can read the eye chart, doesn't that mean you can see? Your eyes are healthy? Doesn't that mean you can see?

You know what? I TRIED to be sighted for the first thirty years of my life! IT DID NOT WORK!!! Why can I see steps but not tell where they are? Why do objects in my house disappear until I touch them? Why can't I recognize faces? Why to things turn invisible when they move? Why is someone walking in from my peripheral vision not there? Why does wearing glasses (or contacts) give me a migraine within 20 minutes every. single. time? Why does light wash out a scene or why does twilight turn everything into nothingness? How can I look right at something I'm searching desperately for, and not see it? Yet when I touch it, suddenly I can see it? Why do curbs look flat and shadows look like curbs? Why is the visual world terrifyingly confusing all the time? Why does reading feel more tiring than running a marathon? Why do I have no idea what eye contact is supposed to do? Why am I constantly running into everything? Why do people look at something and point and I can never figure out what they are talking about? Why do my eyes play tricks on me and stuff looks like something else all the time? Why are museums the most boring places on the planet even though I love history, just because I have no idea what is behind the glass? Why do basketballs come out of nowhere?

Can I see? Yes. 

Can I use vision? No. I'm not sighted. 

But my "corrected" vision doesn't fit the definition of blind. And I CAN see. I just can't use it. I'm not blind. 

There is this tidy crack just between sighted and blind. A borderland, as author Beth Omansky put it. I live in that borderland, and what it means is I'm rejected by both groups. 

You should see, says the sighted group. You should drive and read and recognize me. Well, you know what? I tried. I can't. I tried so hard I gave myself panic attacks. It DOESN'T WORK. I can't use vision like you can. I don't fit in your group. 

You need to fit the legal criteria, says the blind group. We have gatekeepers to keep shysters like you out. You can't get any help or accommodations or solidarity from us! You don't belong. Well, you know what? Maybe your definition doesn't include me, but maybe it should. But I don't fit in your group either. 

So to all the people in my life who have ever told me I was imagining things or faking or trying to get attention or clumsy or absentminded or that I should do things differently, or just LOOK HARDER, you can all just be quiet. Just because neuroscience doesn't know everything about visual processing doesn't mean I'm making this up. Just because eye doctors have a rigid, narrow definition of sight doesn't mean I'm faking. If anything I'm faking sight! And why in the world would I invent this anyway? It's not like blindness is some exotic, desirable trait to have! I can think of a lot more interesting things to lie about, if I wanted to lie about something. But I don't. I just want to live my life. And quit having people tell me how I'm supposed to see and where I'm supposed to fit. 


Schooly Decisions

Every year, we wrestle with what is best for each kid as far as school goes. At the very least, we want to make a thoughtful decision, because education is important!

Here's what we've decided this year. 


Curly thrived at the Charter School last year. The classroom environment, the hands-on, group oriented, science/arts based teaching style and great group of kids was a perfect fit for her. It's a no-brainer to send her back. 


Mister will homeschool again. Because he is miles ahead in some subjects (8th grade math), and a bit behind in others (1st grade handwriting), and isn't particularly socially needy, homeschool continues to be a great fit for him. Bonus for me: he is really fun to teach!


Abi was the big struggle this year. I enjoy teaching her, and we feel that academically, she has higher expectations at home, BUT this has been a rough year. Because of the surgery and PTSD, she struggled to learn at all this spring, and has actually regressed some. Add to this, her intense neediness has both burned me out emotionally and has taken a lot of time and attention away from the other kids. 

We decided to enroll her in school this year. She will get more therapies there and will have a set schedule and routine. Whether she progresses academically or not, she will not do much worse than she did last spring. Her therapist thinks it will be a positive thing both for her and for the rest of us to have some time away each day. She won't feel the pressure from me to "be okay" and I will have a break from her intense neediness, and so will the other kids. 

We have been working all summer with the school district to enroll her in the school close to our house (but we are out of their zone by two houses) where her friend J goes who is also blind. We are still crossing our fingers it works out. 


We debated putting Bean into Kindergarten at the local school, but finally decided to homeschool him too. I enrolled both boys in a local homeschool co-op that has social time, PE and some enrichment classes, and I'm excited to teach the boys myself for the rest of the week. Teaching reading is one of my favorite homeschool subjects, so this fall should be a lot of fun. Also, Bean will thrive on one-on-one attention. 

So there's the plan as it stands now. Fall is coming soon: only six weeks away. 

Baby Steps

It's been five months since Abi's surgery. Seven or eight months of pretty intense PTSD behaviors. Her therapist told me that if she was my only child and I had no other household, homeschooling or work duties, I'd STILL be exhausted by her intense neediness. That made me feel a little better, since I was wondering if there was something wrong with me that I was so worn out. 

Little by little, we are seeing improvement. Her therapist is helping quite a bit, giving her tools to manage the  PTSD flares that seem to come many, many times a day. Time is a healer too. Once, a friend who also has prosthetic eyes said it took about a year to feel normal again after her surgeries, which reminded me that I just need to give her time to heal.

We try to go out together. Sometimes Abi lasts five minutes before she flips out. Sometimes she lasts an hour or two. Thankfully, Hubby doesn't mind coming and picking her up and taking her to work with him. One thing she will do is sit quietly, since her form of freaking out is shutting down. 

It's working out to have her sit quietly with Daddy and listen to books on tape when she is having a bad day. I'm hoping, hoping, hoping that the bad days get fewer, for her sake. But if they don't, we'll manage. That's just what we do. :)

Educating People About Blindness, Part 3: Brick Walls

There are a million things connected to low vision or blindness that have workarounds and don't present problems at all. But there are just a few things we've run into (get it? Pun?) that really don't have a solution. You kind of just have to shake your head and keep walkin'.

1. Overhelpfulness

You'd think a blind kid OUGHT to be pulled off a curb or grabbed from the top of a descending escalator, right? In fact, I just read a blog of a blind woman who doesn't always use her cane who asked people to pull her back if she is about to take a header down some stairs. 

So far, though, strangers grabbing Abi has always been bad. Always. 

But their intentions are so good...

2. The Cane Trip

Blind person walks up behind sighted person and accidentally sticks the white cane between their feet, tripping them. It's completely unintentional and unavoidable if the sighted person is being really quiet. I've asked our O&M teacher and she says there isn't really a fix. 

Abi just about wiped out a frail elderly man in a parking lot the other day. Yikes!

3. Eating Gracefully

You can do it, but it's REALLY HARD. Especially if you're seven and have severe PTSD, so any time the least little thing goes wrong you freak out and shut down. Sigh. 

4. Getting people not to say dumb stuff. 


Adult at park says: You are so sweet to play with that poor little blind girl. 

Blind kid hears: You are so weird kids have to get extra parental praise to play with you. 

Adult at church says: You'll see in heaven someday because bodies won't be broken in heaven. 

Blind kid hears: You're broken now.

Adult on street says: You're so brave. 

Blind kid hears: There's something scary on the street that you didn't know about but I'm not telling you what it is. 

Adult says: Your parents are so great to raise a kid like you. 

Blind kid hears: You are so messed up it takes a real saint to deal with you, loser. 

Adult says: You're amazing. You get around so well. 

Blind kid hears: blind people deserve a medal for doing every little normal thing! People are going to treat you this special your whole life and you never have to try to accomplish anything because walking three steps is enough to win you the Olympics. So just be lazy and bask in the world's admiration of your mere existence. 

Those are just a few of the strange problems that we encounter with blindness. Getting from point A to point B? Not a big deal. Getting dressed? Reading? Brushing teeth? Chores? No biggie. But some of these issues are what make blindness inconvenient! Who knew?

Tuesday, July 14, 2015

Cat food thief

Even though we are smack in the middle of town, wildlife still manages to come around from time to time: in this case a mama raccoon and two little ones, one of which got scared, climbed the pillar of the porch and got stuck. He really didn't want Matt on the porch and hissed and swore at him quite a bit until we all left and he could climb back down.

Monday, July 13, 2015

Abi's Baptism

When our pastor announced an upcoming baptism in the river, Abi jumped at the opportunity. The pastor asked her why she wanted to get baptized, and she answered simply, "because I love Jesus."

This sweet girl has loved Jesus since her nannies told her as a tiny child how Jesus loves her and was taking care of her. And he has cared for her in pretty miraculous ways, even keeping her alive as a baby when she easily could have died. 

Despite all of the struggles she's had, her faith shines so brightly. It's beautiful to see. 

Saturday, July 11, 2015

Easy Chicken Green Bean Casserole

Since I don't like tuna noodle casserole, I adapted a recipe with ingredients that I do like! This one was kid approved. :)

2 cans cream of chicken soup
1/2 cup frozen chopped onion
1 cup frozen corn
1 can green beans (drained)
2 cans chicken (drained)
12 oz package rotini noodles or egg noodles
2 cups shredded cheese
Single bag original Sunchips

Cook the noodles for 3/4 of the time recommended on package. In a large bowl, mix soup, onions, corn, beans, chicken, salt, pepper and 1 cup of cheese. Drain the noodles and mix in. Put into a 9x13 baking pan and top with remaining cheese and crumbled chips. Bake at 425° for 30 minutes. 

Snapshot: Making Cookies

Daddy and Abi are making chocolate chip cookies for dessert. Mmm!

Rabbit Tractor

Some friends of ours who raise meat rabbits told me about a rabbit tractor: a moveable pen that allows the rabbit to mow your grass, while also fertilizing. Bonus: no cage cleaning! You just move the pen every day or two.

We repurposed our baby play yard with a roof to make our rabbit tractor.

Friday, July 10, 2015

Snapshot: Friday Night Board Games


Bean tangled with a wasp at the local playground and got stung twice on the forehead and twice on his left arm. Luckily he isn't allergic, so some first aid of Benadryl, benzocaine and ice is sufficient. 

He quickly got over the trauma and started enjoying the extra attention. 

Wednesday, July 8, 2015

Quick Baking Treat

"Mommy, I want to bake something together!"

Crescent roll dough and Nutella. Roll out flat, spread with Nutella, roll up and cut into pieces using thread or floss. Bake according to directions using a greased muffin tin. 

Great for an easy kid baking project. :)

Waldo Hunting


Our local bookstore organizes a community-wide Where's Waldo hunt every July. Twenty local businesses receive a six-inch cardboard Waldo, and they hide it in their shops for the month. 

Today, we walked downtown and found eleven Waldos! From the public library and Chamber of Commerce to a hair salon, a tye-dye shop, two outdoor sports shops, a bicycle shop and a clothing consignment shop, we hunted through them all. 

Matt and I enjoyed the family time and looking at shops we don't normally go into, and the kids vied for who could find Waldo first. 

As a bonus, we all got some exercise, and Matt and I also bought iced Lattes. Not bad for an extra long lunch break on a Wednesday afternoon!