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!