Brain Surgery

I realized recently that I never posted much here about the biggest little thing in our lives this past year:  Brian’s Little Friend, the asshole brain tumor.  The acoustic neuroma that appeared out of nowhere, so big that every surgeon looking at his MRIs had to do double-takes and come back to us saying things like, “Did you see those pictures?!?!” The tumor that is technically classified as “giant”, since a “large” neuroma starts at 2.5cm and Brian’s is more like 4-4.5cm.  The tumor that has already taken away his hearing and balance on one side, leaving him now deaf as well as blind and struggling for balance.  The tumor that has already required one extensive brain surgery, needs another one in less than two months, and might require yet a third surgery or radiation to completely eliminate.

Such a little thing.  Such a huge disruption to our life.  All our plans went on hold as our stress levels went through the roof.  Just dealing with the anxiety and panic attacks, for both me and Brian, has been difficult, to say the least.  Brian is still in pain more than six months after the first surgery, and knowing the second one isn’t going to be any easier is not helping with the anticipation leading up to it.

It keeps surprising me when I run across people in our life who haven’t heard yet.  And then I have to explain all over again, and people never know what to say. Who would? It’s the ultimate conversation killer.

We received some wonderful gifts from friends and coworkers last fall that helped us get up to and through the first surgery.  We were able to take a wonderful trip down to the Caribbean, and tour some breweries in both Michigan and Florida.  We’re hoping to get some support again as we head into Surgery Part Deux, because we’re maxing out the credit cards right now just trying to stay sane.  Going to do it anyway.  But anything helps.

And if you’ve wondered why I’ve been a little flaky this year, why we haven’t been at festivals much, why I keep not going out…this is it.

If you’d like to help you, you can contribute to our Part Deux fundraiser below, and blessed be to all who can help, whether with money, or prayers and energy.

Click to Donate Now!

Kender and School

It feels weird to be talking about Kender going to school.  We’ve been homeschoolers for so long.  It’s all about what’s best for the kids, though.  In Kender’s case, right now, a group learning environment seems like the best choice.

Although Kender is still making lots of progress, he still resists being directed and guided in one-on-one play and learning.  This is part of what we are working on in his therapy sessions, along with other communication skills like talking about what hurts or what happened.  This resistance, though, makes it very difficult for me to teach him at home right now.  He doesn’t tolerate sitting down and coloring, playing games, doing calendar time, or any of the other activities I’ve usually done with my kids for preschool and kindergarten.

What Kender has shown that he can do, though, is to learn by listening.  He is also beginning to show an interest in playing alongside others.  These things are what make a group environment such a good idea for him right now.  He can participate or not participate in class activities, as he feels comfortable, but he will still learn just by being in the room, by listening and watching what the other kids do.

Kindergarten and preschool are also a great time for inclusion.  Kids in these classes have not yet learned about bullying.  They haven’t learned how to be really mean.  Instead, they are still curious and inquisitive, helpful and caring.  I wouldn’t want Kender to have to go through elementary school.  But kindergarten will be perfect.  He can learn about social skills and be included without being bullied.

The trick: Finding a preschool or kindergarten willing to accept a 7-year-old and treat him like one of the 4-year-olds.  Government school was right out.  Quite aside from my complete lack of faith in the school district’s ability and willingness to accommodate Kender’s special needs for blindness and autism, I’m fairly certain that they would want to place him in first or second grade because of his age, then pull him out for resource room activities and special tutoring.  This would completely eliminate the benefits of being in a group.  My next thought was that Montessori, with their philosophy of child-led learning and multi-age classrooms, would be a great fit.  I called four different schools in our area, but none of them would take Kender; they couldn’t deal with blindness and autism, and they didn’t want a 7-year-old who hadn’t already been in Montessori for many years, regardless of his developmental level.  The preschool program at our therapy center didn’t want him because he was about to age out, again disregarding his developmental level.

I had given up…when I remembered the daycare at Jackson, where Brian works.  Sure enough, they have programs all the way through first grade, and they had a few openings in their kindergarten classes.  And they were willing to take Kender!

So today we made a visit to the classroom to see how Kender would do.

It may have looked very different to people who don’t know Kender.  But to me it looked like a great success, and made me excited to see how this fall goes.

Kender spent most of the first hour lying on A’Kos.  The room was close and crowded, and the other kids were constantly hovering around, wanting to pet A’Kos, asking questions about Kender.  Near the end of free play inside, Kender finally got up and walked around a bit, exploring around the tables and chairs.  He even helped put away a few things as the class got ready to go outside.  Outside, he was again quiet for a long time, huddling on the play structure and listening.  But eventually he got up and started exploring.  He rode on two different trikes, carried a hockey stick around and banged on the ground, and played with an empty bucket.  He interacted with one of the teachers a bit, accepted redirection and occasionally responded to questions.  When outside time was over, he helped pick up a little, and he came to wait in line with A’Kos before going inside with the class.

Anybody who knows Kender knows that was a great success!

We left at that point, with the other kids sitting down to lunch.  On the way out, I spoke with the director a bit.  They seemed very comfortable with allowing the classroom teachers to handle A’Kos (after some training from us, of course), and also with allowing me to add Braille to the classroom and train the teachers a bit on how to teach a blind child.  All-in-all, they were hugely accommodating.

Later, Kender told his dad and his sisters about his day.  He said, “I went to school.  I went to kindergarten at school.  I played with blocks.  There were bubbles.”  He said he had fun.

I haven’t asked how much this is going to cost yet, but we’ll find a way to cover it.  I think this is going to be great for Kender!

I Can’t See

I am autistic. To be more specific, I am a very high functioning autistic, which means that I don’t look autistic.  I pass for neurotypical most of the time.  The passing makes it hard to cope with, though.  Sometimes I wish there were some visible symbol I could have so that people would know what I am when they first approach me, but I don’t have a cane, or a wheelchair, or a service dog, or braces, or anything else that indicates that I might be anything other than what people expect.  So people expect their interactions with me to go a certain way, for me to respond a certain way.  Even when they’ve seen more of how I function, they still tend to go back to expecting me to function neurotypically.  And of course I get blamed for it when I don’t.

I struggled to come up with an analogy that might convey how I feel about this.  It’s hard precisely because it doesn’t really happen elsewhere, it’s not something that anybody would consider doing to a person with a visible disability.  The best I’ve been able to do uses blindness, since that is a visible disability that I have the most experience with (without actually being blind myself).

When a blind person walks into a room for the first time, say to join a club or a church, they might run into people they can’t see.  They might have difficulty identifying people when they only have a voice to rely upon.  They might have to use their cane to find their way around the room, to learn the map of the furniture.  If they do physically run into somebody, or knock over a drink while walking, or commit some other faux pas, of course they will apologize.  They certainly don’t intend to run people over, or to break things, or to make a mess.  They just can’t see where they’re going, they can’t see when they’re about to run into something, and bumps and spills and stepping on toes happen to the most mobile and independent blind adults.  It’s a functional aspect of not being able to see the world around them.

What generally happens when a blind person joins a new group is that people are solicitous.  Once they know that the blind person can’t see, they understand why bumps and spills happen.  They may make an effort to move out of the way when the blind person is walking around, they will try to warn them of things that need care such as open glasses on the table before them, or children running about on the floor, or a cat on the chair they’re about to sit in.  If not, that’s okay, too; the competent blind adult tries their best to use care in movement, and when mistakes happen they can apologize and carry on.

What if, instead of watching out for them, everybody in the room continued to pretend the blind person could see?  What if they kept showing pictures without explaining (yes, I know I’ve been guilty, but I do try), saying “Hi!” without attaching a name to the faceless voice, getting upset when the blind person runs into them, getting upset when something gets bumped or spilled?  What if every response was along the lines of “Why can’t you just watch where you’re going?”

As if they could just manage to see everything in the room and comprehend and interact with it visually if they just tried hard enough.

“I need you to see!”

This is how I feel interacting with other people.  Would you blame a blind person for giving up on having a social life, if this is what they always encountered?

In every social group I’m in, in every relationship, eventually I’m going to say and/or do something that royally pisses people off.  It’s inevitable.  It’s going to happen, because in social relationships I can’t always see where I’m going.  (To go back to blindness, a blind person knows they’re going to fall and run into things at some point, because they can’t see where they’re going.)  It’s the hallmark of autism all the way up and down the spectrum, having difficulty with communication and with social interactions, and it applies to the high-functioning Aspie end of the spectrum as much as it applies to the non-verbal, non-functional end.  But those of us on the Aspie end can pass.  We don’t immediately present as autistic, and we can even go a lifetime without ever being formally diagnosed by a doctor.  We’ve learned how to mimic looking folks in the eye or how to acceptably avoid it.  We’ve learned some required social scripts, how to say hello and goodbye, please and thank you.  We’ve (sometimes) figured out when it is not okay to talk about the things that really interest us, and we have a list in our heads of Things Not To Say Or Do (you know, like “don’t stare at her boobies”, “don’t talk first”, “don’t make the first move”, “copy the people around you in any situation”).

Much like a competent blind adult knows how to use their cane to get around, has lots of practice creating mental spatial maps, has learned special tactile and audio skills to help make up for the loss of vision.  They know to turn their head toward the person they’re talking to, that it’s not okay to rock or poke their eyes, how to tell if the pot of water is boiling or the cup is full.  Some, like my husband, do these things well enough that they can pass for being sighted, at least for a little while.  Nobody ever expects that this means a blind person is sighted, though.

That seems to be the expectation most people have for people like me, though.  That because I can pass for neurotypical, then any mistakes that I make are intentional and willful, just a matter of not trying hard enough.

And gods forbid I ask for help.  When it becomes clear that I’ve messed up somewhere, I’ll try to figure out how.  I want to know where I went wrong, so I can add to my list of Things Not To Say Or Do.  I want to know what I should have done, so I can add to my social scripts and perhaps avoid a problem in the future, should that particular situation ever come up again.  I won’t understand why my intention didn’t come across, any more than a non-verbal autistic understands why their caregivers don’t understand that this particular screaming fit means that they have a headache, but I will accept that the communication did fail.  But asking for help always makes it worse.  Asking for help pisses people off even more than the original offense.  They lash out at me, stop talking to me, yell and scream, tell me I don’t belong, ask me to please shut up and go away.

Imagine a blind person, after running into several people in a crowded room, asking for a little help in finding a seat, and being yelled at to just watch where the hell they’re going or get the hell out.

Hard to imagine, isn’t it?  Because nobody would ever do that to a blind person.

Yet it happens to me all the time.

Is it any wonder that I just don’t bother so much anymore?  Is it any wonder that I would rather just stay home than try to deal with people, stay out of online forums instead of trying to find community?  I’ve had trouble in doctor’s offices, in parenting groups, in offices where I work, in schools, in crafting groups, in religious groups, even with neighbors and friends who have known me for years.  No place is safe, I am never safe from that expectation that I should know better, that I should understand what I’ve done, that I should somehow be able to follow along in a dance I can’t see.

Is it any wonder that even high-functioning autism becomes a disability?

Is it any wonder that I treasure my husband so much just for being there for me, for continuing to stay by my side and loving me through every miscommunication and misread glance and gesture, through every misspoken word and misunderstood request between us?

Is it really such a terrible thing for me to ask for help when I can’t see where I’m going?

What’s It Like?

Another post today about living with disabilities reminded me of a question somebody asked me last night:  What’s it like to live with a blind husband and all these blind children?

First off, the connection with the article:  We see a lot of this attitude around our family’s blindness. People think blindness has to be all-or-nothing, not realizing that “high partials” like my husband and children are still disabled, still can’t drive or perform many jobs, still have to use a cane to get around safely, still have to use adaptations of all sorts in order to function.  I’ve said before that sometimes it seems like it is simpler to deal with being totally blind, because there are fewer choices and decisions to make.  (This is not saying it’s easier to be totally blind than partial, just that it’s easier to select the appropriate accommodations.)  You need a cane that you’ll be tapping, you qualify for a guide dog, you read braille and use audio.  For partials, there are so many shades of gray and so many decisions to make.  Can he read print? Does he need braille as well?  How about a CCTV for reading regular print?  Does he qualify for a guide dog (i.e., is he blind enough)? Does he need a cane to walk normally?  What cane technique, tapping or constant contact, cross body or swinging?  Which school materials should be made large print, which should be brailled, which can be used in audio format, considering that braille and print text are processed differently by the brain than audio?  Can he see colors? Can some functional improvement be achieved through exercises?

All of that is just not on people’s radar.  You’re either blind or you’re not.  So I can tell my son’s cheer coach that he’s legally blind, and yet because he looks and acts like a normal kid she puts him on the back row where he can’t see what the assistant coaches are doing in the front. We get harassed for using the handicapped parking even though my family might not be able to make it safely from the store to the car if we were farther out.

But really, that’s neither here nor there.  What’s it like living with blind people?  I don’t know.  What’s it like not living with blind people?  I don’t have much for comparison.  I’ve been with Brian since I was 15 years old.  It’s like asking Brian if he sees things blurry.  He’ll say no, of course not, my vision is perfectly clear and always has been.  He has no point of reference for “blurry” because his eyes have never worked the way yours and mine do.  I can guess by taking my incredibly strong glasses off, but it’s not the same.  You could come over here and try to do my job for a while, but you know you’ll get to go home soon.  It’s not the same.

I don’t know what it’s like to only have one child, either.  I went straight from zero to three, with all the difficulty that comes of having three babies at once.  It’s not like running a daycare, because they don’t go away at night.  It’s not like having twins, because you don’t have enough arms, enough boobs, enough parents to go around.  It’s not like having children close together, because they’re all teething at the same time, weaning together, learning to walk together, learning to climb out of bed in the middle of the night together, there’s a huge difference between 30 seconds apart and 9-10 months apart.  Part of the reason we had more kids was because I wanted that experience of having a baby, except I still didn’t get it.  I got to have a baby while having more kids who were older and still needed attention.

What’s it like around here?  I’m the only driver for eight people, including the other adult who works and supports our family financially.  I’m the only one who goes to all the doctor’s appointments, the one who is responsible for taking notes and remembering all the things doctors A and B said so I can tell them to doctor C and therapists D and E, because I can’t get ABCDE to sit down at a table together, ever.  I’m the one learning braille and cane technique in more detail than I ever needed as a mere wife, so that I can be the one responsible for making sure all my kids grow up to be productive, independent adults.  Nobody else is going to do that for me.  I can’t trust the government to do it for me.  I’m the only adult who can see all the dust bunnies in the corners and the flies flying around that keep returning and the mold in the shower stall and on the windows and how warped the boards in our porch are getting and all the weeds in the yard.  What people don’t see or notice, they don’t tend to care about.

It’s fucking hard, that’s what it’s like.  But you know what? I’d probably be bored anywhere else.  I’d hate working in an office, working a high-paying job just because of the prestige or money.  I’d hate hanging out with the frat people I drive around in my car on the weekends.  They’re not my people.  My people are right here around me, disabled, magickal, hippie, alternative, everything not mainstream, not normal.  That’s what my life is.  My life is not normal.  Sure, it could be easier, and I’m always looking for ways to improve.  But I like my life this way.

The Kender Project: A Roundtable IEP

My first children were a set of triplets born at 26 weeks gestation, 14 weeks early.  We went from happy young couple planning to start a family to being thrown straight into the crazy and confusing world of the Neonatal Intensive Care Unit, times three.  Because they were both triplets and micropreemies, we got a lot of freebies, and we also got enrolled in a lot of research studies.  One of these was looking at outcomes from improved communication between medical professionals and families.  As part of this study, we were able to meet with all of the doctors who were caring for the triplets all in one room, every week.  Neonatalogy, cardiology, pulmonology, ophthalmology, everybody met in one conference room.  Each doctor would give a report on how the triplets were doing that week, they would outline their plans for the upcoming week, and we would have a chance to ask questions.  Everybody could hear how all of the pieces of the triplets’ care fit into the whole and get an integrated picture, instead of just dealing with their little pieces.

A couple of weeks ago, I attended a training conference about the concept of a medical home and integrated care.  They invited (paid, actually) me to attend as a parent of a child with a genetic condition, specifically.  We talked about the idea of having one medical professional in charge of a child’s care, one person who would talk to all the other doctors and integrate their practices.  The idea dissolved over the course of the day, though, as it became obvious that we, the parents, were the ones who were doing this work.

I am the only adult in Kender’s life who talks to the ophthalmologist, the family doctor, and the psychiatrist.  As a homeschooler, I am also the only one who orders and pays for adaptive equipment like canes, audio books, and braille.  I am the one who handles his service dog.  I am the one trying to figure out, by myself, how to meet his needs, both medically and educationally.

And I don’t think the two can really be separated.  His blindness affects how the psychiatrist evaluates him, and it affects the ways in which we meet his educational needs.  His autism affects how he presents his blindness to the optometrist and the ophthalmologist, and it affects what kinds of adaptive equipment and skills he can use.  Everything affects everything else.  His eye condition led to chronic pain issues, which slowed down his development, and the autism kept him from being able to communicate changes in his vision or pain issues.  Even his dental needs affect his autism and his education, because he was in pain from tooth problems that developed because his autism affected his self-care skills, and his autism also prevented him from telling us there was a problem.  And round and round it goes.

Something about that conference sparked an idea:  What if I could set up with Kender the kind of roundtable conference that we had with the triplets in NICU?  What if I could get an optometrist or ophthalmologist or both, a Teacher for the Visually Impaired (TVI), a psychiatrist who has done a recent developmental evaluation on Kender, a teacher from either a Montessori or Waldorf school (preferable with experience in autism or blindness), A’Kos’ trainers from 4 Paws, even an occupational therapist (OT)?  What if I could get all of these professionals to sit down with me in one room, corporeal or virtual, and talk together about Kender?  What if the ophthalmologist and the psychiatrist could interact directly with the teacher, without the conversation being relayed through me over months and years of scattered appointments?  What if everybody could communicate together, and together we could come up with the best possible strategies for facilitating Kender’s continued growth, development and education?

I thought this was a hugely exciting idea, and I’ve been trying to pursue it for the past couple of weeks.  I’m not having much success, unfortunately.  I’m running into the same walls that I always have.  TVI and OT professionals work for the school districts exclusively and have told me in the past that their contracts forbid them from working privately for somebody.  The Commission for the Blind does not work with children, because that is the school district’s job.  The autism professionals have no experience with blindness.  Most of the professionals, educators, and researchers with experience in the conjunction of blindness and autism are in Texas, at the state School for the Blind there. (No, Michigan doesn’t have one.)  The Montessori and Waldorf teachers don’t want to work outside their schools.  Maybe our ophthalmologist would do it, just for fun, being an inquisitive and research-minded kind of guy; I haven’t asked him yet.  I would pay all of these people, and it would have to be out of my own shallow, bedraggled pockets.  I would do it, for the chance at this roundtable, for the chance to really have a sense of direction with Kender.

I can’t do it alone, though.  I’m hoping to spread the word through some extra channels now, through both the blindness and the autism communities, even through the education communities, to find some folks willing to work with us on this.  I will teleconference, if it comes down to it I will beg, borrow, sell whatever I have to to travel.  I want this to happen.  Kender needs this to happen.  Not just Kender, but the other kids like him whose parents are also lost in the sea of multiple doctors and disciplines.  Even school IEP meetings don’t feature this kind of meeting of the actual doctors who really know about the conditions involved.  I refuse to believe there are no professionals out there interested in this model of care.

So please, share this around, and let’s find some professionals.  I may have a psychiatrist lined up, and I’ll be approaching our ophthalmologist about the idea.  I can talk to the trainers at 4 Paws.  But I also need a TVI and a non-traditional teacher, at a minimum.  If you know anybody willing to work with us on this, please send them my way.

The Kender Report — Surgery Dog Edition

Yesterday afternoon I saw an older man and a little girl walking down the sidewalk next to a busy street.  He had a walking stick with him, a little more than waist-high, with a leather loop hanging about halfway down.  He moved slowly but steadily along in his yellow jacket, just out for a stroll.  The little girl had fallen behind him a ways.  She was reaching up over her head to a broken tree branch that was dangling just above her outstretched fingers.  I could see the thought in her head, that if she could just reach that branch, then she’d have a cool walking stick like Grandpa, and then she could catch up.

I saw these two by the side of the road as I left the hospital with Kender.  It really caught my eye and made me think of the cycle of life, these two points, connected yet on the opposite sides of the circle, one heading up, one heading down.

Kender had his first exam under anesthesia since we brought A’Kos home.  A’Kos and Kender both did fantastic.  A’Kos was a little nervous about being in the new place, with all the new noises and smells, but he settled into his job just fine.

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Kender and A’Kos in the waiting room at Beaumont Hospital Children’s Surgery Center

Kender’s behavior and attitude was completely different from the last few times we’ve been there.  We only take him in every six months for these exams, but the regular nurses all remember us.  Every single one of those long-timers commented on the changes in Kender, from how calm and cooperative he was to how talkative he was.  No fuss getting on the scale, get his pulse-ox taken, getting his clothes changed, getting his temperature taken.  Not only no fuss, but he was doing things himself with my direction, instead of me needing to handle him like a baby who happens to be big.  He even wore the silly surgical cap…sort of…

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Kender kept pulling the cap down over his face!

We ended up having to wait nearly an hour past his scheduled surgery time.  This isn’t uncommon; Dr. Trese schedules everybody for an uncomplicated exam under anesthesia with fluoroscein angiogram, but if he then finds something that needs fixing, whether it needs a simple laser cauterization or a full-out membrane peel and vitrectomy, he just does it right then while the patient is already asleep.  Obviously this can throw the schedule off a bit!  But I think most of us have been “that patient” at least once, so we just wait it out.  Kender waited it out in style this time.

Kender and A'Kos waiting for go time.

Kender and A’Kos waiting for go time.

When it was time to go back, the nurses offered Kender a blanket.  When he said no, they gave it to A’Kos instead.  Then they pulled up the rails and took both A’Kos and Kender into the OR.  I never heard a peep out of Kender, nothing like the crying I used to hear from down the hall when it was time for them to take him away.  I chatted with one nurse while I waited, and another nurse brought A’Kos back to me once Kender was asleep.  Such a good boy A’Kos was to behave even when his momma was away!

It's go time!

It’s go time!

Kender’s eyes checked out good, no changes since his last exam, so all we had to do was wait for him to wake up from the anesthesia.  As soon as they called me back to post-op, A’Kos got back into bed with Kender.  Whenever Kender would start to fuss or try to take something off too soon, A’Kos was there with a “lap” command and a paw to calm him down.  Post-op was the only place where we got anything resembling a negative comment, when an adult patient just waking up across from Kender asked what a dog was doing in there.

A'Kos keeps Kender calm as the nurse takes out his IV.

A’Kos keeps Kender calm as the nurse takes out his IV.

Again, even though he was still groggy as he woke up from the anesthesia, Kender was so much more responsive, helping to get himself dressed and anxious to get off the bed.  He tried to walk to the car, but he was pretty wobbly still!  The hospital makes everybody leave in a wagon or wheelchair anyway.  Kender asked for pancakes for lunch, so we headed up to the Original Pancake House where both A’Kos and Kender took a nap while we waited for the food.

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Anytime is a good time for a nap!

A’Kos was such a good boy for the whole day.  Once we got home, though, it was like another dog had come to visit.  A’Kos wanted to run and chase and play fetch for hours!  He got an extra special peanut butter treat, too.

A'Kos got peanut butter in his kong toy, a very special treat!

A’Kos got peanut butter in his kong toy, a very special treat!

We are so incredibly grateful for all that A’Kos is bringing into Kender’s life and into our family, and for all the help that we received to help bring him home to us!

Fake a Disability

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Without AKos, this trip to the zoo would not have happened for Kender.

“Hey, did you know that [insert disability here] people get to [insert special access here]?  We could do that, too, because the government says that businesses aren’t allowed to ask questions.  Here, you pretend to have [insert disability here] and I’ll [get fake certification/baldly lie/pretend nothing’s wrong], and then we’ll get [insert special access here], too!”

Handicapped parking. Special access to rides without waiting in line. Special test-taking accommodations. Front row seating. Service dog access.  Whatever the accommodation, I’ve seen folks lie and cheat their way into gaining access.  I’ve seen little pet chihuahuas in their service dog vests purchased online.  I’ve seen the looks when we jump a line or take our reserved seating.  I’ve even had friends brag to my face, in front of my blind husband, about how they were parking with grandma’s handicapped plate.

Only a poor simulation of what you might see

Only a poor simulation of what you might see

Stop and think for a moment about the difference between your life and what your life would be like disabled.  What if you were visually impaired?  Put some broken sunglasses on, and put some tape around the sides so you can’t see around them.  Just for good measure, splatter some paint across them, and maybe give them a prescription that’s wildly inaccurate for your eyes.  You can’t take them off or fix them, not ever.  Walking down the sidewalk, you can’t see that bench sticking out just far enough to hit your shins.  You also don’t notice the chairs in the restaurant, the shipping pallets in the store, the little kids running in front of you, the holes the gophers dug in your lawn.  Every step you take comes with the possibility of pain and embarrassment, and because you have some vision you might try to forgo the mobility cane, forgo the obvious label and free up a hand because, after all, you can see a little.  Going to the movies, a live show, comedy or a concert, attractions at Disney?  You’re only going to be able to see bits and pieces, a flash of light here and a moving shadow there, unless you’re lucky enough to talk your way into the front row where you can see more detail, maybe somewhat approach the experience of everybody else who paid $5/10/50/100 to be there.  Waiting in line for a ride?  You can’t see the cute movies on the TVs overhead, you can’t see the decorations in the bushes, you can’t watch the ride and the faces of the riders as you approach your turn.  All you are doing is standing there, nothing to look at, for an hour or more.  How about that parking lot?  Imagine parking at someplace like a Ren Faire and walking a half-mile or more across a rough field when you can’t see the rocks, the tree roots, the way the ground goes up and down every couple of feet.  Can you make it without a sprained ankle or bloody shin, even with a mobility cane?

Still think it’s pretty cool that you used somebody else’s parking space?  Still thinking about lying to get a disabled wristband at the park?  Still grumbling when you see us get seating up front, while you watch the show from behind us with your perfect vision?

a small piece of the form we send to our police department every year

a small piece of the form we send to our police department every year

How about autism, that condition you think your kid can mimic for as long as it takes to get that special access card?  If you only have neurotypical children, it is so difficult to convey the reality of raising a child with autism.  Think about trying to potty-train a child when you can’t reason with them, can’t talk to them, can’t explain anything (in our case, you couldn’t even show him), can’t read it in a book, can’t watch it in a movie or TV show, can’t play a computer game about it, can’t use stickers and charts and earn delayed rewards, can’t talk about the difference between big kids and babies, none of that, you can’t do any of it because your child can’t talk, can’t understand rewards, can’t understand future and past, none of it. Think about having to make sure your child has a diagnosis and is registered with your local police department just to protect yourself (or your child!) from going to jail and your child from the foster care system.  Think about trying to go to the store, go to McDonald’s, go to a park, do any of the normal things you don’t really even think about with a toddler in a 6-year-old body.  Think about trying to figure out if your child has an ear infection, a stubbed toe, or gods forbid something like appendicitis, when your child’s only way of expressing pain looks exactly like the way he expresses frustration, impatience, fatigue, and confusion, via a total meltdown that involves hitting, biting, screaming, and destruction of property.  Try, just try, waiting in line for an hour with this child who doesn’t understand what’s at the end of the line.

Right now, federal law protects you when you lie and cheat your way into the accommodations that help make life just a little more bearable for those of us with disabilities.  Businesses aren’t allowed to ask you if you really need that alleged service dog, they aren’t allowed to ask for proof that your child is autistic before granting access.  It’s not going to stay this way, though.  The more these accommodations get abused, the more businesses are going to fight back.  Already, we’ve seen our access to accommodations get taken away completely as parks like Disney take away the ability to skip lines at the rides (because waiting for an hour outside of the line is no better for an autistic child than waiting for an hour inside the line, and skipping the lines for many was the difference between riding one ride and leaving, and maybe riding as many rides as everybody else before going home to have their meltdown).  Handicapped spots are getting moved farther down the parking lot, only requiring a ramp to qualify, nevermind the actual distance involved.

If businesses had their way, many would probably already be denying access to service dogs.  Incidents that happen across the country with untrained dogs make it dangerous for businesses to allow access.  You may still be protected by the terms of the law for now, allowing you to declare your own service dog and make your own identification, but that’s not going to last.  All it takes is enough people to be upset about this to change the law.  What will happen then is the question.  Will the law be changed to simply require us to provide proof of disability, certification of our dogs with numbers a business can call to verify training?  Or will dogs and other service animals be suddenly outlawed, all access protections taken away, leaving those of us who need these animals to go out into the world at the mercy of businesses jaded by their experience with fake service dogs?  As it is, children who deal with the government school systems do not have the protections you would think, and I have yet to hear of a school that did not put up some kind of resistance to having a service dog come to school with their child.

“But you’re a libertarian!  What would you do without any government protection?”

Kender with AKos, calm and not screaming

Kender with AKos, calm and not screaming

I’ve never had a problem explaining myself to people with questions.  Want to know exactly what Kender’s service dog does for him and why he’s with us?  Ask away!  Better yet, just watch.  Every minute they are walking together, you can see how A’Kos keeps Kender going.  You can watch them curl up on the floor instead of Kender having a meltdown.  You can watch A’Kos make Kender smile.  I’d rather it didn’t happen, but you might even see Kender get away from me and A’Kos track him down.  A’Kos is working whenever we are away from home.

Other service dogs’ skills may not be as patently visible.  In a free and voluntary system, we would still have our dog from 4 Paws for Ability with our certification and identification cards, as we do now.  We would still provide phone numbers for businesses to contact 4 Paws for Ability if they had questions.  Many libertarians foresee the kinds of ratings systems used on Amazon and eBay expanding to cover more and more kinds of businesses and services, so that you could hop online and see what kind of ratings 4 Paws has, whether they are legitimate or have been labeled as an ID factory.  You could train your own dog, certainly, but your self-issued certification would need to have some backing by a third-party with a reputation for valid certifications in order for anybody to truly respect it.

And I think I would be more okay with that system than the one currently in place.

Borderline

Everything medical in our lives (except for Kender!) seems to be borderline.  The boundary line (ohai Loki!) between “clinical” and “not a problem” is not always a happy place to live.  Being on the boundary line means that medical treatment almost always can help, but doctors won’t diagnose or treat anything until it crosses that line.  Being a family full of medical “zebras” doesn’t help anything, because the doctors rarely think to test for the conditions we actually have.

My hypermobility syndrome has ridden that line my entire life.  When I was a kid, I constantly sprained my joints, but the dislocations were never severe enough or lasted long enough to get medical attention.  I’m not completely rubber-jointed. My skin already shows the fragility my mother and grandmother faced but doesn’t stretch like elastic. My eyes are bad, but they’re correctable.  I get orthostatic hypotension and cardiac arrythmias, but never bad enough to actually pass out or predictable enough to show up on a formal test.  I have IBS, but not severe enough to land me in the hospital.  Pain medications don’t work on me, local anesthesia frequently fails or works only sporadically, and even general anesthesia doesn’t work quite the way it should.  My platelet and hematocrit counts are frequently low enough (150,000 and 12, respectively) that I can’t donate blood or platelets, but not low enough to set off any flags when I have CBCs drawn, not low enough that I ever actually bleed out.  I have pain, headaches, neuralgias, symptoms of carpal tunnel and sciatica, but I manage to keep functioning through all of it so it must not be something that needs fixing, right?.  Even my vitamin B levels when checked last year were low (B1 measured 8 on a scale of 8-30), but not low enough to be clinically deficient.  All of these things affect how I feel, and I feel so much better when any of them are fixed or brought back up into the middle of the normal range, but getting anybody to treat these things is usually more trouble than it is worth.  I can see signs of the same syndrome in almost all of my children, but again the symptoms are borderline, and when a diagnosis for them will require traveling to another state to see a specialist who may not be covered by our insurance, I have to wonder if it is worth the trouble at this time.

With the kids’ eyes, until Kender was born everybody was riding that borderline between “normal” and “Houston, we have a problem.”  It was always just a little off, just a little tweak here and there, nothing to worry about, we’ll just get stronger glasses, have a couple of surgeries to tweak the muscles, do some patching, nothing to see here, move along.  I had a growing suspicion for most of the triplets’ lives that there was something more, that there was something genetic in there, that they seemed too different, but it was never different enough to make anybody look further than ROP and lazy eyes.  When Kender was born blind, the FEVR diagnosis for everybody became obvious, but they had never thought to look for it before.

My hypoglycemia is barely clinical.  In real life, I never actually pass out.  I probably never drop below 65 or 70 mg/dL…low enough to make me feel like shit, but not low enough to be clinical.  So I got passed around from doctor to doctor with these vague “I don’t feel good” symptoms and got labels like “psychotic”, “atypical painless migraines”, “atypical petit mal seizures”, and even AIDS (once…before they tested at least), with nobody even thinking to check my blood sugar.  When they finally gave me a glucose tolerance test, I dropped down to 30 or 35 and made the diagnosis obvious…but they had to think to give me that test first.

Brenden’s cold urticaria rode that line for a long time, making it difficult to diagnose.  He only reacted in certain situations at first, like swimming in the Mason High School pool or eating iced shrimp (surprise: he’s also allergic to shrimp!), and we struggled for a long time to try and figure out what the connections were that were making him break out in hives.  Once a doctor thought to put an ice pack on his arm, the diagnosis was obvious, as it would have been had he started out reacting as badly as he did in 2011 and 2012.  Instead, he rode that boundary line with the cold, and he continued to ride it when tested for the full spectrum of allergies a few years ago.  Every single allergen in the test caused a small reaction, just enough to make it positive but not enough to show symptoms in everyday life.

Autism is another one of our boundary lines, with most of us having symptoms and capable of being diagnosed when tested, but also not being severe enough generally to make anybody think of testing us.  I first heard about Asperger’s Syndrome when an acquaintance shared her concerns about her son.  He sometimes wet his bed, he would go to school and forget to brush his teeth or hair, he had trouble making friends, he wouldn’t look people in the eye, his language and math abilities were off the chart but he had trouble in school.  I told her to quit worrying, I had had all of the same problems growing up and I was just fine.  Then he got diagnosed with Asperger’s, and at about the same time we started seeing signs of it in Caitlin.  I’ve had every differential diagnosis in the DSM for Asperger’s at one point or another and most likely should have that diagnosis, but I was never severe enough to warrant somebody else thinking of it when I was growing up and it hasn’t been worth arguing over as an adult.  Caitlin also presented as borderline, so much so that her diagnosing psychiatrist at first said there was no way she was on the spectrum…but she tested positive for Asperger’s on every test he gave her.  Some of my other children probably would have the same diagnosis if they were tested, but as with me it hasn’t been worth the trouble to seek out the diagnosis.

A story about PANS this morning brought all this back to the front of my thoughts.  It’s not the first time I have heard of PANS or PANDAS, and I know people personally with this diagnosis.  It always makes me think of Liam.  When he was a baby and toddler, he was such a happy little boy.  People would comment on how sweet he was, how happy and kind.  When he was two, all that changed.  His near-constant smile turned into a near-constant frown.  He would actually growl like an animal and lash out at the slightest provocation, biting and clawing.  He didn’t want to cuddle anymore.  All those comments about “What a nice boy,” went away.  It was severe and sudden enough that we took him to the doctor, where we were told that it was all because we had moved and were expecting a new baby.  He never “got over it,” though.  Another odd thing that happened only last year was the discovery that giving him regular pain medicine, something as simple as Advil, seemed to change him back into that happy, smiling boy that we’ve missed for so long.  We also found out that he could have a condition that ought to cause intense pain, like an abscessed tooth, and not show any sign of it.  Yet with all of that, Liam continues to function.  He does his schoolwork, he learns new skills, he is not speechless and hysterical…he is subclinical.  He is riding that borderline.  And I am almost certain that some diagnosis and treatment, something more than “He’s just depressed about moving” would make a difference…but it is possible to get that?

How do you go to doctors again, for what seems like the ten-thousandth time, and say, “Listen to me this time, we have another invisible zebra that needs treatment.”  I know that doing something would help, but when the problem is borderline and my life is already so packed, it’s way too easy to just let it slide, to say it’s too much, it’s not worth worrying about.

The Kender Report

Kender has had a busy week. On Monday, he went under anesthesia for an eye exam, which showed nothing new. Dr. Trese said we could start backing off one of the three eye drops Kender takes every day, which is happy news.

The bigger event was Wednesday, when Kender went under anesthesia again, this time for dental work.  At five years old, Kender has never had a successful dental exam. Until just last year he wouldn’t even let us clean his teeth regularly. Since we started using a spin-brush and singing a song, he lets us brush his teeth so well that the dentist could find no fault with our cleaning job.

The damage of years past was already done, though. Dr. Meyers gave Kender eight filling, four caps, and one baby root canal. The root canal in particular means he’s probably been in pain from his teeth for who knows how long. How exciting that we found and fixed yet another source of pain for him, and sad that he was in pain at all.

Two surgeries in one week were a little rough on Kender. He was droopy for a couple of days, much slower to wake up than usual, and one evening he even ran a brief fever. Today he seems to be back to his usual self.

I am so excited about the potential developmental leaps Kender may make now that his teeth are fixed, much like the incredible progress he made in 2012 after his eye pain was relieved. I want to say I see changes already, longer speeches and more paraphrasing replacing straight mimicry. In reality, it’s probably too soon to see any definite improvement, and I need to sit back and relax. A hard thing to do sometimes!

Blind Binarism

This post has been sitting in the back of my mind for a while.  It started with a post about disability binarism, the idea that everyone is either completely disabled or completed abled.  On its face, most reasonable people would agree that this idea is as silly as the idea of people being only black, white, Hispanic, Asian, etc., when it comes to race, when obviously you have a ton of people who are some mix of two or more races.  However, that question that keeps popping up on surveys and forms and the census and seemingly everywhere these days asking everybody to quantify their race with only one box shows that black-and-white attitude toward race obviously still exists.  The same is true when it comes to disability, and especially to blindness.

What do you think of when I say somebody is blind?  For most people, the image that comes to mind is somebody who is completely blind and can’t see a thing, even light and dark.  What if I told you that the vast majority of blind people I have known actually have some vision?  There two legal definitions: “Visually Impaired” is a best-corrected acuity of 20/70 or worse in the better eye, and “Legally Blind” is a best-corrected acuity of 20/200 or worse in the better eye.  There is a huge spectrum between legally blind and total vision loss.

Someone with partial vision may be able to read normal print held in their hand, but unable to see the blackboard in a classroom.  They may be able to walk around, avoid obstacles, and recognize faces, but not be able to read the menu at McDonald’s.  They may able to see during the day but not at night, or vice versa.  They may not have stereo or color vision.  They may see the world as if through a permanent fog, or through a broken glass, or in a funhouse mirror.  They may be able to see the sidewalk but not the curb, the countertop but not the steps, the table but not the chairs.

Blind binarism and ableism come into play when a person seems on the surface to be able to negotiate the world as well as a sighted person.  Binarism says that this person is, therefore, “not blind” and does not need the tools and skills of a “real” blind person.  This is a big deal because this attitude exists not only among the general non-blind public but also among some of those very people whose job it is to educate and train our children in the skills of blindness so that they can become independent, functional, and productive adults.  Every month, sometimes every week, our blind homeschooling community welcomes a new refugee from the government school system, a family that has been told their child doesn’t need Braille even though they can’t read regular print, that their child doesn’t need to learn to use a cane even though they trip over every curb and step, that their child doesn’t need to know the skills of blindness in the kitchen or around the house even though they might injure themselves or be unable to live independently if they don’t.

This attitude also affects how blind people choose to function in the world.  Should I carry my cane into this new place so that I can be sure of not falling over something, or should I wing it so that I won’t be identified as blind?  Or, conversely, should I carry my cane into this place that I know well enough not to need it just to spare my family from being berated by somebody who thinks we don’t need our handicapped plates?  Do I use Braille on a daily basis for those things for which it makes sense, or do I struggle to use declining vision so as not to appear disabled?  Do I fight for the accommodations I need in the workplace to function on a level with my peers, or do I settle for lower wages and substandard employment and a government check?  There is a lot of pressure on “high partials” to pass for sighted, to blend in with the sighted world and not cause trouble.

All the visually impaired people in my family fall along this spectrum.  I have one daughter who is not legally impaired but has low vision in one eye, another daughter who is not quite legally impaired but can’t see well enough to drive (that cutoff is usually around 20/50), one son who is impaired but mostly functions as sighted since he is not in school, and another son and husband who are partially sighted in one eye and have no functional vision in the other eye.  None of them look blind when people first meet them, unless they notice my husband’s or my son’s deformed eyes.  All of them are impaired to some extent, though, and benefit already from using various skills of blindness at various times. All of my impaired children are being taught the skills of blindness, as their condition can be suddenly degenerative, and they could need these skills later in life.

It’s not all or nothing.  There’s a lot of gray.