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!

Sunday, June 28, 2015

Educating People About Blindness, Pt 2

I did a Q&A on Facebook a couple of weeks ago, and I got some really interesting and thoughtful questions. 
A friend mentioned the other day that she had a hard time imagining living as a blind person just because she had no idea how day-to-day things were accomplished. It gave me the idea: why not ask?
So here is what I posted. Ask! Hit me with any question that you've always wanted to ask a blind person but were to embarrassed/tactful/ashamed to ask. No question too dumb or too specific. In fact, the more specific the better. I'll try to answer all of them, but bear in mind, the answers are from me personally and don't represent every blind person out there. Blind people are all really different. Ask about me (low vision) or Abi (blind) or even family members. I'm curious to see what you are curious about!
Blind friends, feel free to chip in. If you feel like sharing how you do stuff or if you want to give the common questions you get. 
I'll lead with a few in the comments to get you started!

Q: How can Abi run around and not be afraid?

A: She is used to it. It's not like when you close your eyes and lose sensory input you're used to having. She pays attention to echoes and air currents and flooring changes and smells, and gets rich sensory input that all feels totally normal to her.

Q: How do you tell your shampoo from your conditioner if you can't see it?

A: Put a rubber band around one, or buy different shaped bottles.

(From a blind friend) Or, when all else fails, touch the tip of your tongue to the lid. They taste very different.  One taste like soap and one taste like lotion. People freak out when I tell them that but it's not like I'm eating it.

Q: How do you keep from stepping on the dog?

A: I step on him until he learns to keep out of the way. Poor dog. 

Q. How would you explain colors to a blind person?

A. Most blind people have seen colors at least one time in their lives. 

For those who haven't, you just have to get creative! 

Q. Are there ways friends/family can make their homes/get togethers easier to navigate and enjoy?

A. That's really individual to each blind person, and it's probably fine to ask that question to the person in an aside beforehand. 

For us, Abi and I kind of like to have people chill out. Don't freak out about Abi and stairs. Don't flutter around and worry. Don't apologize over and over for stuff sitting on the floor. Just let us figure out the layout ourselves and memorize it. We just need a little time and space, and when we need something like a drink or the bathroom, we'll ask.

Q. Bugs. Smashing them, eating them. Etc.

A. Oh my, bugs freak. me. out. It creeps me out that they are around and I don't know it! Abi seems to be the same way. If someone says, "a bee!" she will jump and ask, "where?"

If I feel one on me I'll jump and try to fling it off or I'll grab it in my hand and crush it, which is so gross.

One of the weird things about my vision is floaters that looks like bugs all. the. time. I've learned to ignore them. But feeling a creepy crawly on my skin... ugh.

But those not on me? Ignorance is bliss. 

Q. Do you think with modern technology driving will ever be possible for the blind?

A. I'm pretty skeptical. At this point, all the legislation for self-driving cars says a "licensed driver must be in the vehicle at all times in order to take over manual driving as needed." So how is that any different that just riding with a sighted person driving?

For me, I love walking and taking public transportation, so it's not often I miss driving anyway. I'm not sure I'd get a self-driving car even if it was an option. It's just a different lifestyle, and one I much prefer.

Q. How long have you had low vision? And is it rude, in general, to ask that of a blind person?

A. My whole life. I didn't realize how much coping I was doing until high school, and I didn't tell anybody until a few years ago. It's a long story. Maybe someday I'll write a book. 

Q. How do you learn to read Braille? My fingers don't distinguish between all the little dots!! 

A. First of all, when reading Braille, you don't look at the dots, you look at the shape of the letter. Secondly, you're probably pressing too hard. You use a feather-light touch. Try feeling the hairs on the back of your other hand. That's how lightly you read Braille. If you do those two things, anyone (unless you have diabetic nerve damage) can read Braille by touch.

How do you use a computer for things like Facebook?

A. As for using a computer, sometimes I do it visually, and sometimes I use a screen reader like voice over or NVDA. Abi always uses a screen reader. It just says everything on the screen aloud.

Q2. Wouldn't you have to listen to an awful lot of garbage and advertisements and nonsense to get to the content that you want though? That's the part I'm not understanding… I think it would take forever to do something that way, but I don't think that's actually the case so there must be something different that you do?

A2. Yes, you do. That's why you set it to talk really fast, press the advance key a lot, and bug programmers to make their sites more accessible with less garbage.

(From a blind friend): Speaking of computers; people often ask me if I rely exclusively on dictation.
Every person's needs are different.
I Touch-type just as many people were taught to do.
Dictation is a tool I sometimes use, but I do not depend exclusively on it.

Q: How can I make my website easier for blind/sight impaired visitors without the overload of words?

A. (From a blind friend who is a technology specialist) I can help answer that last one about websites 
when using things like font attributes to create visual heading to separate information, make sure that the HTML tag for headings is also included. Tables are also often a source of frustration for screenreader users. Just because things are laid out to look like they are in a table, does not mean that they are in a table to a screen reader  so again, it comes down to ensuring that the HTML tags are created appropriately. If you are using a CMS and you don't have as much access to the HTML code, check and find another site that has displayed content using the same CMS, and run the accessibility check her from that website on it before choosing to use that particular template. And, when using pictures, use the pictures property dialog box to add alt text to the image. I know that means quite a bit of extra work behind the scenes, but the sighted person cannot see the alt text attached to the image, so you get the same effect… Your cited visitors get their pictures and your screen reader users get the description of the picture and the same information. Low vision users often benefit from a site that has been created using minimal colors, high contrast, and has extra spacing. Sitecues is a pretty cool ad on that site developers can get from aisquared that allows visitors to customize the colors for their particular visual condition and needs. The information above, about HTML tags, also gives a clue to how screenreader users can skip some of the garbage on webpages. When webpages have been structured with functional HTML elements, screen readers recognize those elements and allow users to jump from one heading to the next, one paragraph to the next, navigate a crossroads or down columns in a logical order in tables, and can even skip to the next element that is not one, like a link, that can be interacted with. It takes many years, and a lots of problem-solving skills, for a screen reader user to be very quick and efficient with those skills so it's really helpful when the webpage elements exist in a usable structure One of the most common questions I get, how do you know where IM?  It should be obvious, sound and you're speaking, but it's not always. Some of the other questions I get, is how does the dog no where to go? Can the dog read signs?how does the dog know when the light is green how do you know which dollar bill is which? How do you write a check? How do you know if you're getting on the right bus? How do you know which stopped to get off at? And the list goes on and on.

Q. (To a friend who is a parent of a blind child) Do you have any standard questions people ask you guys?

A. Mostly how she can get around so good. Want to understand how braille works and braille display that we talk about. Will she get a guide dog. Most people don't realize that is for when she is older. I loved the guide dog answer. So helpful. Oh people Always ask if she is completely blind. Ha the old is she blind enough to be blind thing.

(Me): I don't understand why blind people are expected to get around poorly. Being blind is NOT like sighted people closing their eyes and fearfully groping around.

(Another friend): But we sighted people don't really understand that. We try to imagine what it would be like to be blind and all we know to equate it to is walking around with our eyes closed. We actually need someone to tell us it isn't the same.

(Parent): I like the idea of informing people that it is not the same. I tend to understand that because of my experience with J but yeah the average person just has their perspective with nothing else to go on.

(Me): Ok people!!! *hollering* IT'S NOT THE SAME!!!

There, I told everybody. 

(From another friend)
I am legally blind and use a guide dog for mobility, so here are some of the common questions (and answers) I get:

Q: How does he know when it's safe to cross the street?

A: He doesn't make the decisions; that's my job. I listen to traffic patterns and use what useful vision I have to make the decision to cross. His job is to double check for anything in the environment I may have missed (e.g. a turning car that I didn't notice or one that's speeding by).

Q: You can just tell him where you want to go and he finds the place, like doggie GPS, right? (I joke not)

A: Nope, I have to know where I am, where I want to go, and how to get there. My guide dog makes sure I don't bump into anything, or trip, and helps me negotiate crowds and street crossings, among other things. I can, however, "pattern" him to certain locations through repetition and reinforcement. This makes finding routine places much quicker.

Q: Does he let you know when he has to go to the bathroom?

A: If he's letting me know he's gotta go, I must not be paying good enough attention to his feeding, watering, and relieving schedule. Most of the time, he stays consistent on the schedule but I do give him more water breaks and such on the weekends or vacations so he may need to go more often. If he does have to go between scheduled breaks, he will whine and run to the door (if we're at home). If we're at work, he holds it because he's in harness, or he'll snuggle up to me to tell me he has to go.

Q: Does he ever get to be a regular dog?

A: I get this quite a lot because so many people only see us when he's working. Yes, he gets time off-harness and off-leash just like any other dog. He has toys and favorite activities (like fetch and digging around in flower beds). We spend a lot of time playing and relaxing together because, like the working part of our relationship needs upkeep, so does our social relationship. If he's going to perform at top-notch, then he needs some down time to just be a dog and enjoy himself.

Q: Does he bite?

A: The only thing he bites is his food and his toys. He would never bite a person and he is really careful around small children. In fact, if he could live with small kids all the time, I think he'd much prefer that.

If you have any other guide dog questions come up, do let me know. I'd love to contribute to your blog!

Q. Have always wondered . . . . at what level of vision is one considered blind? I always assumed zero vision but I seem to be wrong.  

A. Legally the definition of blind is 20/200 or less that 20° field of vision.

A very small percentage of blind people have no light perception.

Q. Do those who are legally blind prefer to be called low vision?

A. It's different for different people. 

I use the term "low vision" even though I dislike its negativity because it's the most immediately clear to people. In the UK, the term "partially sighted" is more positive.

For me, I'm not even legally blind, because my vision fluctuates so widely. On a good day with the strongest glasses (which cause a migraine within 20 minutes) I see 20/40. And this is what the doctors count. On a bad day, with a headache I can see maybe 20/1600. On most normal days it's probably 20/400. But because mine is "correctable to the best correction," I'm not legally blind. The vision rehab counselor says I'm "functionally blind."

I don't really care which term I use. I don't mind describing myself as blind, except that it's confusing to people who think "blind" means "lights out."

Just like there is no legal definition for me, there is also no descriptive term for me. "Intermittently can't see worth beans" comes closest.

As far as others, some say "legally blind." Some, who reject the "blind is bad" memes and want to advocate, proudly call themselves Blind. Some, who are ashamed of it describe themselves as "I don't see too well." Some say "low vision." It really varies from person to person.

Family Pics

Saturday, June 27, 2015

Summer doings

After a shopping trip on the bus, we stopped off downtown to get coffee and draw with sidewalk chalk. 

Wearing silly wigs. 

And hats. 

Eating ice cream. 


Anne of Green Gables tea party and book discussion as a community outreach from our local library. 

Upgrading to the next size bike. 

Lots of summer fun!