An Abundance of Love

My facebook feed has been full of posts about Leelah Alcorn, a teenage transgirl who committed suicide by stepping out in front of a semi on the highway.  I have a friend with a trans child who felt this story hit her like a physical blow in the chest.  It shows that the alternative of a dead child is a very real possibility when parents do not support their LGBTQ children.  For me, it reminds me of Guy Sterling, a friend in high school.  He committed suicide, too, after being thoroughly rejected by his family and peers for the crime of being gay in small-town Texas.

When I think of stories like Leelah’s and Guy’s, I can’t help but think about what the parents are probably feeling. They’re terrified by the Protestant vision of neverending hellfire and damnation, terrified that their only child will be lost to them forever, convinced that they can save their child if they only try hard enough. They believe that if they “give in” and accept their LGBTQ child, they’re condemning their child to that eternity of suffering. It’s not a lack of love. It’s an abundance of love combined with what their religion is teaching them. We can’t fight that by just saying they don’t love their child. They do. They love their child so much they will do anything for their salvation.

Sometimes what parents do to try and “save” their children ends up looking to the child like persecution, control, and rejection.  This isn’t limited to LGBTQ children.  It doesn’t always end in suicide, thankfully.  It still can leave horrible scars to the mind and soul, scars that are very difficult to heal.

I was raised Protestant.  I was baptized twice, first as a Baptist, then again as a Presbyterian.  I went to church with friends, sung and even toured in youth choirs, dated the occasional evangelical.  When I discovered Wicca and witchcraft at age 15, the country was in the grip of what would later be known as the Satanic Panic.  My mother was terrified for me, I think.  She doesn’t like to talk about it now, but I know she had books in her room with titles that ran along the lines of “Satanism and Your Teenager.”  When I brought Buckland’s blue book home, so engrossed in my discovery that I couldn’t put it down, she insisted that I never bring that book in her house again, that evil book with the giant pentagram covering the back cover.  When I told other family friends that I was a witch now, and they came to her terrified that I had sold my soul to Satan, she begged me not to say things like that.  When I moved in with Brian before we got married, all the books on Wicca that I had left behind in my room mysteriously vanished.

My mother was trying to save me.  I was learning and embracing a new-to-me religion that called to my very soul, spoke to my connection with the world.

15 is also the age when I went to college.  After my two years with TAMS were up, I had made many friends among the regular college students, friends who would still be there at UNT after all my TAMS classmates left for farther horizons.  I wanted to stay at UNT, continue on as a regular college student and pursue a CompSci degree.  Several of my friends were moving into an apartment for the summer, and I wanted to join them.  It took a gentleman’s agreement between me and my roommates, since at 17 I could not sign the lease, but they let me in.  I got a job so I could pay my share of the rent.  I had a car.  I had a bank account, albeit one many miles away in Austin.  I was determined to live like any other college sophomore or junior in that town of music majors.

Granted, I was also an undiagnosed Aspie.  I had never worked out self-regulation skills to help me handle things like chores and cleaning.  My hygiene was probably questionable.  My possessions were a mess.  My job was, ironically, working in the daycare at a church, of all places.  I had a pet snake that I actually didn’t know how to care for.  My bank account got bollixed because I had to mail in deposits, and I mistimed writing checks on the deposits and had a series of bounce fees.  I spent an inordinate amount of time on the computer, either working on typing in my Book of Shadows or hanging out on IRC, in #wicca or #hottub.  I struggled with depression, knowing I was different but not yet understanding how and why.  I had a lot of life skills yet to learn, and I was going to have to learn them the hard way.

It’s a good thing I didn’t find out I was bisexual until several years later.  That could have been the fatal straw, added on to everything else at the time.

My parents wanted to save me from that.  They wanted to bring me home, take care of me, send me off to college again to be the successful <insert money/power career> they dreamed of.  They saw all the problems and wanted to fix them, wanted to fix me.  I saw them trying to control me, trying to cut off my choices, not listening to me.  It came to a pretty dramatic climax that summer.

Somehow, though, my mother was able to get around that.  I don’t know how, but she’s still my mother.  She calls me and listens to me, comes to visit for holidays, goes out to the movies or the casinos with me.  She came to my first wedding, made my wedding cake.  She came when I was pregnant, came when I was having babies, held all my babies.  She came to my second wedding, the one I held mostly to share with my father.

My father took it all as a personal affront.  He said my actions were the same as me saying I didn’t want to have anything to do with him anymore, despite my insistence to the contrary.  He has spent the last 22 years treating me mostly as an acquaintance rather than a daughter.  He doesn’t visit unless I’m on his way to someplace else, or unless somebody is dying.  He didn’t come to my weddings, although he goes to his girlfriend’s children’s weddings.  He did not hold my babies.  He has never visited for the holidays; he spends them with his girlfriend’s family.

Something in what my mother did holds the secret here.  Somehow, despite her belief that I was going down in flames and in need of rescue, she was eventually able to accept me as an independent human being capable of making my own decisions, choosing my own path, accepting my own consequences.  Somehow, she was able to continue being my mother even when she disapproved of my actions.  There’s more than love there.  There’s some kind of strength needed to love something so much you can let it go, so much you can continue to give love and support no matter what.

We can’t just tell Leelah’s parents they don’t love her, because they do.  We have to find a way to teach how to love somebody and let them go, no matter what.  I don’t know how to do that when Protestant Christianity or other restrictive, eternal-damnation religions are involved.  Do you?  Do you know how to tell somebody that their religion is wrong, or that they must ignore their sincere beliefs, ignore everything they hear from their Bible and their church and their community?

The Kender Report

It’s been a while, so I figured it was past time for another post on Kender.  October was a busy time for us, with so many birthdays to celebrate.  A’Kos also has made some new friends.  He is just as happy to calm my friend’s autistic children as he is to work with Kender.  He will lie on top of Rebecca when she’s feeling down, and he will let Thomas lie on him when he needs a nap…although Thomas doesn’t leave much room for Kender when that happens!

Probably the biggest thing that has happened in the past month is that Kender has started receiving therapy.  We found the Children’s Therapy Corner in late September, and it was like the perfect answer to what I was seeking.  They are not connected with the schools, they file with our insurance, and they provide speech therapy, occupational therapy, and even music therapy.

As soon as I found them I called to get Kender in, and he started therapy on Halloween.  Since our insurance allows 60 visits per year, none of which he has used, he’s going three times a week until the end of the year, giving him a good head start with it.  Kender is getting speech therapy and occupational therapy, both therapists working together so that we only get billed for one visit for both services.

Speech therapy is working to improve Kender’s interactive communication.  In the evaluation, he was only able to maintain 2-3 circles of communication at a time.  They want him to be up to at least 20-30.  Not only will this make him better able to play with other kids and otherwise interact with the world, it will make it much easier for us to teach him more advanced skills as he moves toward preschool and kindergarten.

Occupational therapy is focused on changing Kender’s posture and getting those fingers out of his mouth.  Kender has a tendency to lie down when he wants to play with something, to curl into a ball and hide his face, and to lean on furniture when he is standing.  The goal is to get him to sit upright to play with things, as well as forcing him to use both hands together and to cross his midline when reaching.  The midline issue is something that I hadn’t even realized was a problem until the evaluation and results.  Mostly I had blamed it on having his fingers in him mouth too much, and that may be part of it but it could also be a symptom.

The music therapist came in for one session last week to observe Kender.  She sang a song and played a drum with him for a bit, and everybody was very impressed to see how engaged Kender was when she was there.  Since he has always loved to sing and showed a great talent for remembering and reproducing music, we thought music would be a good adjunct to his therapy.  So even though our insurance doesn’t cover it, we’re going to find a way to work her in as well.

One of the new toys that Kender has discovered at the therapy center is their lycra swing.  I call it the body bag swing, which I think annoys the therapists a bit, but come on, just look at it:

Kender in the body bag swingThat is definitely a body bag!  The swing completely encases Kender, and the strong, stretchy Lycra gives him a whole-body hug as he swings or spins.  He’s been spending 5-10 minutes in this swing at the beginning of every session.  The therapists say it helps to get him more alert and engaged.  Since I’m already planning to build Kender (and all of his siblings!) a loft bed, I may just get something like this to hang underneath it so Kender can have some swing sling action at home.

I’m really excited about getting these therapy services going.  It makes the roundtable meeting feel much less urgent, as I want to see where we are after a couple of months of therapy first.  Also, the Center folks said they would be happy to attend such a roundtable when I get it put together, and might even be able to provide a conference room for us!

That’s it for today’s Kender Report.  Come back later to find out whether A’Kos eats the Thanksgiving turkey, or whether we can finally get Santa pictures with Kender!

 

Bad Comedy

I’ve been told before that I should write a book about my life.  All the strange and weird things that cross my path and keep changing my fate ought to make for interesting reading.  Right now, I think it would make a bad comedy, to use a friend’s words.  Suspension of disbelief in the audience might be rendered completely impossible.  There’s only so many times lightning is supposed to strike one person, after all.

Computer processing power is measured in FLOPS, or FLoating-point Operations Per Second.  On Tuesday, we had an intake appointment with a new therapy center that we hope will be of use to Kender.  On the basis of that appointment, I have coined a new measurement: HPI, or Head-desks Per Interview.  The intake required detailed information about Kender’s medical history and development, and for the first time I caused a measurable HPI in the therapist taking down the information.  For example:

Yes, he’s had surgeries.  He’s been put to sleep more than 20 times now. ::headdesk:: We think he was in pain for about 1.5-2 years straight from his eyes. ::headdesk:: Oh, and there were the teeth, and the root canal he needed, and the pain from that which didn’t get fixed until this spring. ::headdesk::

I got a kick out of this, personally, because I know this is what is going on inside somebody’s head when we really sit down to tell our life stories.  With this guy, I actually got to see the headdesks and count them.  He made no effort to hide his reactions, to be polite or nod like Freud about to ask about my mother.  I thought this was pretty fantastic.

Another bad comedy in my life right now is the state of my home, its appliances and furnishings.  Every single thing in our house has something wrong with it.  I have to laugh, otherwise I’d cry.  The most spectacular failure this year, though, is the refrigerator.  Technically we have two, but the second is tiny and was only ever intended to hold corny kegs; it has only one shelf, no drawers, and now no rail on one of the door shelves.  The other is our main food fridge, a very nice 25-cu-ft Samsung with French doors and a bottom freezer.  It isn’t that old, only about 5 or 6 years.  However, this refrigerator decided to start crapping out in early September, and we have now had 8 visits from Consumers Energy to try and fix it. (Thank the gods we have an appliance repair plan with them that covers the refrigerator!)  They have replaced half a dozen parts, and every time the refrigerator turns on, works for a day or two, and then dies again.

They started sending out a Senior Technician for the last few visits, and Monday he ordered yet another part to replace.  Yesterday he came out to replace it.  The first thing we found when he opened the box was the company sent the wrong part. ::headdesk:: This part had an extra thermostat piece on it, so the tech’s boss told him to just cut it off and install it anyway.  Then he finds that the plugs don’t actually match. ::headdesk:: So he cuts off the plugs, swaps them out with wire connectors, and shoves the whole thing into the back panel so he can get the screws back in.

It’s already looking like it’s dying again.  I think I’m out of headdesks on this one.  All I can do is laugh.  Or I would, if my head weren’t pounding so hard that my eyes are already watering.

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.

A’Kos Goes to School

I realized after we got home that I didn’t get any pictures of A’Kos and Kender today.  I’ll have to remedy that next week!  Today was A’Kos’ first trip to Foster where we have our homeschool co-op classes.  Kender has been waiting to go back to Foster ever since the last term ended, and the last few days he’s been asking if we were bringing A’Kos to Foster.  Yes, we were!!

A’Kos was just as wonderful and helpful at Foster as he has been everywhere else.  Kender has always been painfully slow about getting in to the building, walking down the hall, and going up the stairs.  A’Kos makes that process much, much faster!  Once we got to the community room, Kender immediately ran off to the kitchenette to play with his old friends: the sink, the microwave, and the empty cabinets.  Robin, the office staff member that we deal with for scheduling, came down to say hello and admire A’Kos.  Everybody was so happy to see him, after watching our fundraising efforts and especially after sitting in Foster with Kender every week for the past several years.

A typical day with Kender at Foster has involved constant “Where’s Kender?” checks as he hides in the cabinets, plays with the light switches, escapes down the fire escape stairs, climbs a table and opens the second story window next to it, or just runs off down the hall to play in the water fountain or the bathroom sinks.  Most days I would spend all or part of the day just sitting at the doorway to the community room where everybody not in classes hangs out, blocking the way so Kender couldn’t leave.  Getting him to stop doing the things that were dangerous always involved screaming and thrashing as we pulled him away from the activity.

Today, I could take A’Kos over to where Kender was and distract him, then get him to follow us back to something more appropriate.  I didn’t have to follow him around, though, or even sit at the doorway (although I did stay near the door); I was able to sit and chat with my friends and even get some knitting done.  We walked out to the playground with A’Kos after lunch, and when Kender got tired we walked back inside and even took the elevator.  Kender took a nice nap with A’Kos in the afternoon, and then played a little bit before we left.  A’Kos especially enjoyed all the attention he got from the other kids, who also learned lessons about when it is okay to approach a service dog and when it is not.  When it was time to go, Kender got his handle and we walked on down to the van together, with no detours into random ballet classes.  Very little fussing, no major meltdowns even after we got home.

What a difference!

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!

Dermatographia

I recently discovered that I have dermatographia.  As with Brenden’s cold urticaria diagnosis, it is so obvious in retrospect that I can’t believe it took me so long to recognize it.  I was absent-mindedly scratching at my leg one day a few weeks ago when I suddenly noticed the area I was scratching was covered in little bumps that I knew hadn’t been there before.  On a whim, I ran a fingernail down the inside of my forearm.  The area started to itch, and then the entire line raised up in a welt.  Later that evening, I was able to write “Hello World” on my arm, legibly.

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According to the research I’ve done, dermatographia involves the same physiological response as Brenden’s cold urticaria.  Only the triggering stimulus is different.  Mast cells release histamines when they shouldn’t, causing the itching and swelling.  Because things like environmental allergies and asthma involve an additional step of the body calling for the mast cells to go to work, the drugs that work for those allergies don’t work as well on the urticarias.  The best advice I’ve been able to find so far is to avoid the stimulus.  For Brenden, that meant staying warm.  For me, that means not irritating my skin.

Have you ever tried to avoid scratching when you itch?  Mosquito bite? Can’t scratch it.  Got a little dry skin? Better treat that with lotion, don’t scratch it.  Sometimes I’ll get an itch on my hip from my jeans rubbing, or on my lower back from my hair tickling or a belt rubbing, and I’ll scratch at it without thinking.  Then I’m rewarded with a large area of hives and welts and massive itching.  Don’t scratch it!!!

It takes over a minute for even the itching response to start, and three full minutes before the welts really show.  That means that I really have to think sometimes to figure out what is causing the problem.  I’ve had itchy skin for many months, and I’d been ascribing it to dry skin, especially during the winter.  It didn’t go away with summer’s humidity, though, like it should have.  Finally I’ve realized that just the act of scrubbing my body with a washcloth in the shower and then scrubbing it dry with a towel is enough to cause the itching. If I then give in and scratch any part of that, it will itch ALL DAY LONG.  Now I’m on a quest to figure out all the sources of itching and fix them.  Do I need to give up jeans?  Certain fibers? Elastic waistbands?  Anything with seams against my skin?  Tags in my shirts? Bras?

It’s that combination of relief and stress that comes with any new diagnosis.  Relief to have a framework that makes all sorts of things suddenly make sense.  Stress from trying to cope with whatever is going on and try to get it to stop. I don’t want to be bothered, don’t want to think about it, until I’m faced with welts from hip to ankle because I started scratching something, thinking just a little bit won’t hurt.

Just another day around here.

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.

When I Grow Up…

My Aunt Anne might be coming to visit me this month.  Just the thought of her visit is driving me nuts.

I have idolized my aunt since I was a little girl.  Unlike my mother’s family, I never saw my dad’s family very often, so every time I got to see any of them it was something super special.  When I was really small, I loved her long, long hair and the way she could tuck it all up with a couple of big pins or barrettes.  I got to visit her home once before she hit the road, and I loved how she had so many cats and such cool decorations.  I loved the way she wore gypsy skirts and big, dangly earrings.

When she got divorced and hit the road, she’d come to visit in her van, sometimes with one of her tall, tall sons.  She lived out of that van, camping out, riding her bike all over the world.  When she came to visit us, she’d cook for us, cooking amazing gourmet vegetarian meals that I was totally in awe of (even if I didn’t always want to eat them, sad little carnivore that I am).  I loved her red hair and splotchy freckles, the way she looked like she lived in the sun and had been kissed and loved by it.

When I was probably around 13 or 14, she and her son Brenton came to visit us in Georgetown, and they let me head out on a bike ride with them.  I have never, ever forgotten how fast they left me behind.  I didn’t even make it all the way across the dam before they pulled ahead of me, and they left me in the dust as we headed up the hill on the other side.  I turned around and headed home, feeling sad and tired and nerdy fat girl, and they showed up hours later having ridden for miles and miles around the Hill Country.  I was a bicycle kid, riding my bike all over my side of Georgetown, but I found out that summer day just how wimpy a cyclist I was.

When I was in college and getting married, Aunt Anne was riding her bicycle through Europe and Africa, where the locals in Kenya called her “Bicycle Lady” while she lived with Aunt Kay in Thika.  When I was busy taking care of three babies at once, Aunt Anne and her friend rode their bicycles from Portland, Oregon, to Portland, Maine, and I followed their trip from my computer at home with spinning wheels in my mind.  I’ve seen her maybe once a decade, exchanged emails maybe once or twice a year.  As my grandmother (who was about the same age as Aunt Anne) grew sicker and eventually died, I marveled at the difference between these two relatives, both the same age and yet both so different.  I was determined that I wanted to grow old like Anne, not like my grandmother, as much as I loved her.

Every once in a while, another story would come through the family grapevine: how Aunt Anne was riding down the street one day and didn’t watch where she was going and ended up plowing into some kind of truck, breaking both arms.  She was back on her bike as fast as she could get the casts off.  How Aunt Anne got diagnosed with an autoimmune disorder, and her doctor limited her to only twenty or thirty miles a day.  How Aunt Anne had to have bypass surgery, and she left the hospital AMA after only a couple of days, unable to stand being so still for so long. Damn, my Aunt Anne is starting to sound like Chuck Norris!!

I’ve always wanted to grow up to be like my Aunt Anne, cool and natural and strong and knowledgeable, confident in herself, independent and self-sufficient.  I’ve tried a few times to get my cycling abilities up, but life always gets in the way.  I just hold on to the thought that Anne didn’t hit the road until after both her sons were moved out, so I’ve still got plenty of time to crank up my awesome just like she did.

Every chance I get to see her could be my last.  Aunt Anne is 82 years old this year.  When she told me she expected to be coming through Michigan with (new) Uncle Ken this summer, bikes and all, I got super excited.  Now I’m hitting the roads again, trying to crank up the miles and the pace, just hoping like hell that this time, this super woman more than twice my age won’t completely abandon me in the dust again.  I wonder if she’ll even want to ride with me.  I ride bicycles like my Uncle Don rides motorcycles, helmet-free, only the minimum of dark, utilitarian clothing and equipment.  I look at pictures of Aunt Anne and Uncle Ken in their colorful helmets and riding jerseys, and remember her clipless pedals, and I wonder what they’ll think of this black sheep riding anywhere near them.

I just hope I get the chance, and a chance to have some conversation over wonderful food after, one more chance to talk with and learn from one of my most amazing relatives.

Update on Death of Flies: The fly bait experiment continues.  The first round was aborted after only six hours, when it became more than obvious that honey was going to win and we wanted some counter space back.

wpid-20140708_192614.jpgI left that one up for about 48 hours and discovered that it wasn’t really effective beyond 24.  Today, I set up Round 2 of the Great Fly Bait Experiment:  honey vs. beer.  Don’t worry, dear; I used 3-year-old beer already declared skunked for this round, not the good stuff.

wpid-20140710_145110.jpgThe beer is on the left, and the honey is on the right.  They are mixed the same as before, 1/2 cup of bait mixed with 1/2 of water and about 1 teaspoon of dish soap.  And now…we wait. Again.  Time for a bike ride or something.

 

 

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.