I Want to Dance

As Tamara moves into her cheer career and I’ve been posting pictures and comments, one of the more frequent sentiments I’ve heard from my friends is along the lines of, “Imagine you involved with cheerleading! That’s so unlike you!”  At first, I laughed along with them and agreed.  And then I realized that was wrong.  Most of my friends have only really known me in adulthood, maybe from high school.  And since the best friend I had before then has been lost to me for more than twenty years, nobody else knows how wrong it is.

I’m a big girl.  I’m not as big as some girls.  I have plenty of friends who are bigger than I am.  I still wear clothes smaller than a size 20.  Although I’m back at my highest non-pregnant weight, I’m not even as big as I was the last time I was at this weight thanks to being in much better athletic condition.  I complain about not being able to buy clothes I like and how much I hate shopping, but I can still trust that a race or event t-shirt will fit me.

I was a big girl growing up, too.  I remember how difficult it was to find jeans that fit when I was a girl, and how one time my mother had me wear my cousin’s hand-me-down jeans to school…which mortified me because they were a boy’s jeans.  Starting in second grade and continuing for years, I dealt with the petty bullying of being the fat girl.  I believed I could never be physically fit and so I never really tried.  I worried about sucking my tummy in constantly.

I took dancing and ice skating lessons when I was a girl.  I dreamed of being a ballerina when I grew up, like most little girls do I guess.  I took lessons at a studio that taught ballet, tap, and jazz all together.  I loved dancing. I loved being able to follow the beat, to move my body with it. Learning choreography was like learning to play piano or learning to knit: it always came easily to me, and I rarely had to work very hard to master any step or sequence.

That all stopped when I was eleven or twelve, when my ballet class graduated to en pointe dancing.  After allowing me to dance with the class for a year or so, the teacher told my mother that I could not do it any longer, that it would permanently damage my feet to dance en pointe at my size.  So I quit dancing.  As I recall, that was about the same time my mother started signing me up for weight loss programs, too.

Shortly after that, as I moved into high school, I discovered the drill team.  This was a group of girls who went out and did dance and marching routines during games, like a cross between the marching band and the cheerleaders.  This sounded like so much fun, so I tried out.  I spent a couple of weeks going to the training sessions.  I bought a shiny unitard to wear (it was pink).  I spent hours at home stretching to try and master the splits.  Shortly before the official try-outs, they handed out a list of rules for drill team members.  Including in that list was a maximum weight.  And that was it.  I tried out, but I was obviously disqualified no matter how well I danced.

One secret that probably only my lost friend Alicia would know is the “How to Be a Cheerleader” books I had when I was little, and how I would practice doing jumps and cartwheels and cheers in my room or my backyard.  Forget about actual cheerleading.  In Georgetown, all the cheerleaders were elected by the student body.  The only thing I would be able to garner votes for would maybe have been “most invisible.”  I tried going back to the dance studio then, but since I couldn’t dance en pointe I was thrown into a class of beginners several years younger than I.  Not much point in staying.  In my sophomore year I discovered show choir, where I got to use my talents at both singing and dancing.  I lettered in show choir, and those were some of my best memories of high school.

The next chance I had only lasted a few weeks.  In between my first and second year at TAMS, there was a couple of months when it looked like I would have to go back to high school.  I spent that time training with the local high school marching band, where I got to be a flag (I played oboe and bassoon, which aren’t allowed to march).  Not only did we have set marching routines that we did along with the band, we worked on special routines where we got to step out from the band and do our own thing, dancing and spinning those giant flags.  I had so much fun, and a bit of me was sad when I got back into TAMS and left that marching band behind without ever having performed.

Once you grow up, the opportunities for dance seem a bit more limited.  I discovered ballroom dancing around the time we got married, but lessons were expensive and Brian can’t dance or follow a beat at all.  (He can’t carry a tune, either, but he has other fantastic talents.) I was good at it, and I would love to do it again if I had a partner, but I don’t.  I tried joining an adult tap class once, but I was only 19 and felt terribly uncomfortable and out of place with a group of women my mother’s age.  Once I was over 21 and discovered the world of topless bars, I thought that sounded like fun, too, but they didn’t want anything to do with girls over a certain (small) size, either…although I got to play at it a bit when Plato’s Playhouse was still open.

Skating is the closest I’ve been able to come to the dancing I want to do.  While I still never get to do couples or trios skating (no partner, no friends), anybody can skate up to a group working on a slide and just join in.  It’s athletic, it takes rhythm and coordination, you follow the beat and show off to the music.  I still tend to feel out of place there, like I’m the wrong color, but it’s one of the most fun things I do these days.

Still think being involved in competitive cheer is out of character for me?

All of that, and we come back around to Tamara, my oldest daughter, my little clone.  She’s built just like I am, strong and stout.  She also shares my love of music and dance, my coordination and ability.  She loves to sing, she loves to show off for a camera or an audience, and she is even better at gymnastics than I ever was, able to do backbends and splits with far greater ease.  She started asking me a couple of years ago if she could sign up for some activity that would involve dance or gymnastics, because she wanted to be a dancer…and my heart sank.  I thought back to all the times I tried to do those things and was knocked right back down, and just as I homeschool in part so my children won’t have to deal with the cruelty of their government-school peers, I didn’t want to throw Tamara into something where she would just be told “no” or put in a box because of her size.

I spent most of a year trying to find something.  I sent messages and emails out to my big girl friends, asking about any outlets they might know that would be size-friendly and welcoming.  I didn’t get much response, and in fact I felt like they thought I shouldn’t even be asking.  I even tried sending an email to Ragen Chastain, since I thought a woman who actually was an adult fat dancer would be able to give me some advice, some direction to look in. (She never responded.)

Finally, in January a post came across my homeschool group from a Young Champions cheerleading coach who was looking for more recruits.  I had seen her post before but had never followed up on it.  This time, I clicked through and took a look at the team and their pictures from past events…and I saw big girls!  I saw big, strong girls, girls who could throw other girls in the air, who could support the base of a pyramid and still do backflips!  And they were smiling and posing with their teammates, appearing to all be good friends despite their size differences!  They did the things the drill team used to do, performing fancy dance routines in between their stunts and shouting.

So here we are.  I felt a little uncomfortable at first, but mostly because I think I was expecting the other parents to act the way I remember cheerleaders acting in high school, all exclusive and special and part of a club I can’t join.  But now I’m a cheer mom, and my daughter is a cheerleader.  And all I can do as I clap from the sidelines is wish I was out there with her, and be grateful that she’s found an opportunity that I never did.

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.

Swing 2.0

10175972_10152761214034745_823227162545809448_nKender got a new swing today.  If I had been doing HabitRPG last year, today I would have accomplished the reddest of my red reddy red to-do tasks.  That rider has been sitting in our shed since we put this playset up…was it 7 years ago? 8?  There’s been a baby swing in that spot for most of that time.  By the time Jarod really outgrew it, Kender was ready for it.  For the last two years I’ve been saying I was going to take down the baby swing and put up the rider.  It took the family across the street asking if they could have our baby swing to get me to do it.

And now I know why I was putting it off.  I am going to be so sore tomorrow, I’ll be lucky if I can manage to salute the elements, nevermind actually carrying things up to the room.

I didn’t expect it to be such a big deal.  I thought, well, there’s been a swing there all along, with the swing hooks already installed.  Take down the baby swing, hook the new swing on the same hooks.  Done!

Wrong.

When I got the box out, the swing itself was in pieces, so I went back inside and down to the basement to dig up the 9/16″ wrenches.  I took those out to the playset, hauled the contents of the box over, then looked again at the instructions.

It needs its own brackets installed, four of them.

Back into the house and down to the basement to get the portable drill, find the 3/8″ drill bit, carry it out to the playset.  Back to the basement to find the stepladder, carry it out to the playset.

Have you ever tried to drill a 3/8″ hole in a doubled piece of wood that’s been weathering outside for 8 years?  When said piece of wood is over your head with the tallest ladder you have available? I tried, really hard.

Back into the basement to dig the corded drill out from underneath all the other power tools on the workbench.  Then dig through every coffee can and finally completely unload the bottom shelf with all the bladed power tools to find the @#$@#$%#%^ bit key.  Take that out to the playset.  Go back to the living room, get the one-and-only ginormous extension cord, wade through the black raspberry patch to plug it in.

Have you ever tried to drill a straight hole through double-thick, aged wood over your head so that it lines up with metal brackets on both sides?  All I can say is that I spent more time drilling those holes, multiple times from both sides, than on anything else.  Arms holding a drill over my head the whole time.

With that, and with the holes in the swing itself not being quite big enough to get the bolt through, instead of a quick swing swap I spent about two hours pushing and pulling and lifting and hammering and swearing. Lots of swearing.  And all this was after my bike ride and bodyweight workout for the day.  So yeah, I’m hurting, especially above the waist.

But Kender has a new swing!

Odyssey of the Mind

Today’s theme is “Hurry up and wait,” as I sit here in the Traverse City Central High School cafeteria while the kids do their Odyssey of the Mind State competition.  Odyssey of the Mind is a creative competition that gives kids problems to solve and tasks to accomplish and then scores them on how well they come up with solutions.  They get extra points for style, creativity, and teamwork.  Outside assistance is strictly forbidden. Even the coaches can’t really coach or offer ideas or suggestions.  All the coach can do is facilitate what the kids want to do, and I think warn them if they stray outside the guidelines.  I can’t keep my mouth shut when I see something that could be fixed or improved, so I absolutely can’t coach this event.  I stay out of the way and leave that to our wonderful friend Katharine.  I try not to find out anything about what the kids are doing until the day of competition, because I know I’ll just have to butt in and give advice that could be disqualifying.

This is the second year of Odyssey for the triplets, and the first for Liam.  They are working with some other boys that they worked with last year.  It has definitely been a part-time thing for them…until they saw the other teams at the Regional competition.  Our kids had met for 2-6 hours a week, and while they fulfilled all the technical requirements for their problem, they didn’t really go further.  There was paint and cardboard, and a creative script.  At Regionals, they saw teams that had been meeting for 10 or more hours a week consistently since September, that had been working together for years and so amassed a collection of props and devices to draw upon.  There were elaborate constructions on wheels, with spinning parts and music from speakers.  There were costumes ready for a professional theater performance, wooden structures, all kinds of things.  The kids were impressed.  They really only ended up going to State because they had no competition in their division and problem, and their Style score was so low that there was some question for a bit whether they would meet the minimum points requirement needed for State.

As soon as they got back from Regionals, the kids got busy.  They met formally for at least 6 hours every week, and various of the kids would stay at Katharine’s for hours after a meeting had officially ended, painting and building and sewing and gluing.  They took acting lessons and fleshed out their script with more jokes and puns.  They worked very hard for all of March, and from what I could see when they loaded all of their gear into the van Thursday, they made quite a leap from where they were.

They may not be ready to place high enough to go to Worlds.  They will have direct competition today, from teams that already passed the test of Regionals.  (Frankly, we parents are kind of hoping they don’t go on to Worlds, because that’s another $5000 and a whole week in Iowa!)  I promised to take them out for dinner if they medal, but I’m just excited to see what they come up with.  It’s amazing what sprouts from their heads and hands when they really set their minds to something.  Meanwhile, they’ll get to see another level of competition that they’re up against, and will go home with more idea of the standards they’re facing.

And maybe next year, or the year after, they’ll go to Worlds.  That is, if Katharine can stick with us that long!

Tidbits

  • When the Kirby salesman comes and vacuums my living room with his Kirby vacuum and gets up all that extra dirt, I don’t hear, “Kirby vacuums are better than my vacuum.” I hear, “Gods, I’m a terrible housekeeper, and if I would just keep up with vacuuming my carpets every week, there wouldn’t be so much dirt there.”
  • These days, I get all my news from Facebook.  It’s a good thing I have friends in all parties and of all creeds, pretty much.
  • I would rather knit for $5/hour than be a dressmaker for $20/hour.
  • Every time I try to clip and use coupons, I wonder if I wouldn’t make more money per hour knitting.
  • I have no interest in forcing my autistic child to suppress himself and behave unnaturally just because he will “need” to as an adult. I much prefer seeing the person he is and waiting to see the person he naturally grows into.
  • I am impatient for Kender to “grow” into better communication, though.
  • I washed my car once. Then winter happened.
  • I have a very short attention span when it comes to getting Kender to do something he doesn’t want to do.

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!

Chuck E. Cheese

This is what happens when I take my family to Chuck E. Cheese.

Jarod’s 8th birthday was last week, and every year he likes to go to Chuck E. Cheese with a friend or two to celebrate.  We never set foot in there any other time, just once or twice a year for a small birthday.  This year, Jarod decided to take his friend Skyler and his brothers and sisters. (Brian and Kender stayed home.  That place is just too much for them, not really fun at all.)  With everything else going on this month, I didn’t schedule an official party package in advance, so we just walked in around 4:30pm today.  We found a table, ordered pizzas, and I got 30 tokens for each of the kids to play with.  I expected they would spend them, we’d eat pizza and cake, and then we’d go.  2 hours, tops, if that.  I settled into the corner of the booth with my knitting (the effing mittens, as a matter of fact).

We didn’t leave that place until after 8 o’clock.

See, this is what my kids do in places like that.  Whether it’s Chuck E. Cheese, the skating rink, an arcade at an amusement park, or anywhere similar, the same pattern emerges.  Brenden leads the way in scavenging, and he has taken all the other children as his Apprentice Collectors.  They scour the place, checking under machines, under booths, behind tables, around trash cans, every conceivable place (and probably a few inconceivable ones!), looking for lost tokens.  In a busy place like Chuck E. Cheese on a weekend afternoon, Brenden can come up with 20 or 30 tokens at a time.  With his little team of minions following in his footsteps, they came up with a steady supply of tokens whenever they seemed in danger of running out.

Then there is the cute factor.  My kids must have a charisma of 50.  Whenever they stop moving, finally turning in a bucket of tickets and then bringing their high-fructose haul back to the table, somebody comes up and drops tokens in their laps.  I swear to all that is holy, people just walk up and give my kids tokens.  Some people will come up, give tokens to the ones that are there, and then leave extras “for those other two, when they come back.”  One of these days I should test them out on a street corner with a cardboard sign.  They might bring in enough to pay off the mortgage!

Finally, there is the free labor factor.  As bad as their rooms and my house look, my kids love to clean up after other people.  They’ll pick up trash, collect lost items, whatever.  My girls will go scouring the floors for dropped hangers and those funky little clothing clips while I’m trying on clothes.  Brenden will find price tags under the shelves at JoAnn.  Tonight at Chuck E. Cheese, Tamara led the way in picking up empty token cups, those little plastic cups they give you at the cash register to carry your tokens around.  Soon she had all the other kids following around behind her, digging empty token cups out of places even the staff never thought to look.  She collected about a hundred and fifty of those things in a stack that went from her waist to the top of her head, and then…AND THEN…the whole team took them up to the cash register JUST AS THE STAFF WAS RUNNING OUT OF CUPS.  The grateful staff HANDED THEM SOME MORE TOKENS for restocking them in the nick of time, and the kids were off and gaming again.

It’s like they have a magical bottomless bag of holding spewing out a never-ending supply of tickets and tokens.  Every time I thought we were about to leave, one of the above brought in more tokens.

Sorry, Skyler’s grandma.  I tried to get him home sooner.  I think he had fun, though.

Safe Space

This post from AutisticChick came up in my feed today, and it along with some of her other posts got me to thinking about Kender, about the differences between our life with Kender and what I see other people describing in support groups.  I thought about the way I try to interact with Kender, about how it is different from what therapists and teachers would do in school.

My primary, overriding philosophy with my kids these days is to let them be themselves as much as possible.  I am here to act as a guide, a resource for when they have questions, a role model as much as I can be, a safety net if they stray unknowingly into danger.  My kids amaze me with how much they manage to learn and grow on their own, outside of formal “school lessons.”  I want to encourage that as much as possible.

With Kender, I try to do the same thing.

As I discovered my own Aspieness as an adult and my daughter got her diagnosis, I reached out to connect with other adults on the spectrum.  The groups that I found were open not just to those of us who mostly “pass” but also to those who will never pass in real life, the non-verbal, stereotypical autistics.  In between were some who may have been more severely impacted as children but who now can “pass” or come close to it.  Those who were diagnosed as children had the most interesting stories to tell.  Over and over, I heard tales of what it was like to go through typical autism therapies from the viewpoint of the autistic, rather than the parents and teacher.  I heard about overwhelming stimuli, about Pavlovian training regimes, about what it was like to figure out how to put on a mask for the therapists and parents and teachers until that mask got stuck in place.  I heard about what it was like to move into adulthood with that mask on, only to discover too late that it was suffocating, burning, melting the real face, the real spirit, beneath it.  I heard about the meltdowns, the PTSD, the traumas that would come to the surface in adulthood, causing breakdowns, interfering with real life as these people had to relearn how to interact with the world all on their own.  All in the name of making sure that, as children, they didn’t look and act differently from the other children.

I don’t ever want to do that to Kender.

So I work with him in my own way.  I listen to him.  When he doesn’t want to be guided into an activity hand-over-hand, I don’t try and force him to accept it, as the therapists wanted us to do.  I wait until he is ready.  Over time, I have learned how to get Kender to engage in activity on his own terms.  Usually it means getting the activity out and waiting for him to come to it.  It means playing with the toys ourselves, and letting him observe what we do.  It means turning a book into a song, playing with the song, and then bringing him back to the book to see that the song is on the paper, too.  It means accepting his desire to play with a toy in the “wrong” way, finding out why he plays that way if I can, and building on it.

When Kender is trying to escape a situation, especially as he gets older, I let him wander for a while.  When we go to park days and Kender needs to leave the noisy playground for a quieter place, I let him head off down the trail into the woods, following a distance behind, keeping him within sight but not interfering.  If he heads toward a parking lot or street, I move to stand in front of him.  I try to redirect him with open arms, ready for a hug or a cuddle.  At Foster, I bring him back to the room, but I try to encourage him to walk on his own, rather than pick him up and carry him.  When we come back, if he wants to go hide in a cabinet, I let him.  I know that’s where he feels safe.

I talk to Kender the same as I talk to my other children.  He can’t talk back much yet.  He is non-verbal, although he has words for concrete things.  He can say, “Can I have some blueberries?” but he can’t say, “My tummy hurts,” or “Yesterday I had pizza for lunch!” or even “My name is Kender.”  I pretend he can, though, and I search inside what he does show me for clues to the words that are stuck in his head.  When I tell him I’m disappointed in his behavior, he will get very quiet, and sometimes plant a kiss on my lips (usually he goes for cheeks) to say he’s sorry.  When he’s happy, he will bounce up and down and flap his hands, run off into another room and do a circle or two before coming back.  When he’s bored, he throws things down the stairs (and I remind him that I would rather he found another way to make loud noises!).

I’m not perfect.  There are days when I think that one more minute of his loud “Aaaaaaaaaaaaaaaah!!” sound will drive me absolutely bat-crazy.  There are times when I hurt so much that I can’t do anything more than pick him up and bring him back to where the rest of us are.  He’s not perfect.  There are times when he gets sent to bed because he won’t eat his dinner, when he gets a time out for hitting or breaking or hurting somebody or something.  He’s a child, and children get into trouble.  I’m a human, and I lose my temper and get frustrated.

I didn’t care that he was spinning the wheels on his trucks as a 3-year-old instead of running them along the ground and making engine noises.  He got there in his own time.  I don’t expect him to stop flapping or rocking or humming just because they make him look different.  He’ll stop if and when he doesn’t need them any more, when he discovers how to self-regulate and why this will be a good thing.  My goal is not to force him to move at a faster pace, so that he can look and act like his age-peers.  My goal is to support him and keep him safe while he finds his own path for dealing with the world, so that when he gets to the point of being an independent adult capable of making his own way, he comes there knowing exactly who he is, with the self-awareness and understanding he needs to adapt to new situations, without the trauma of trying to live up to others’ expectations.

When I was putting Kender’s Match Video together, I worried at first that we hadn’t caught enough footage on meltdowns.  When I thought about it some more, though, I realized we don’t really have that many.  The meltdowns don’t feel like the biggest problem to me, like they seem to be for some families.  I think one reason for that is not pushing Kender past his limits just to force him into a mold or into our comfort zone.  I try to listen to Kender and meet his needs before he gets to the point of a meltdown, and I will remove us from a place or situation early if I can in order to avoid it.

In some ways, maybe, our path takes more work.  We work hard to understand, we shape our lives around his needs to a certain extent, we try to decipher what’s going on in his head.  But mostly I think it’s less work.  The path I’ve chosen to take with Kender, as opposed to the path I saw therapists and schools laying out for him and children like him, it’s like the difference between industrial farming and sustainable agriculture.  One produces faster and higher-volume results, but it takes a large amount of outside inputs, produces inferior products, and over the long term ruins the land through pollution and nutrient depletion.  The other takes a different kind of work up front, but it builds a strong, self-sufficient ecosystem, rich and varied, capable of taking the natural inputs of the world and producing a rich result, again and again and again for a long time.  It might not be as pretty.  It might not fit in a mold or take the best advertising pictures.  But it is healthy, strong, and nutritious.

It’s Finally Finished!

It’s done! Hallelujah, praise all the gods, drink and be merry, the match video is done!  I finally finished it Friday evening.  Since then, it’s been compiling into standard format files and uploading to the internet so I can share links with the trainers if something happens to the USB drive I’m going to Priority Mail to them tomorrow.  It is 7 hours and 45 minutes long, right about 20 GB of data in .mpeg format.  The Kender’s Match Video post has the outline of everything we put into the video.  I’ll be uploading a few pieces to YouTube and adding links to that post as I get them set up.  One of the more awesome clips I’m looking forward to sharing follows Brian and Kender through a parking lot and into the mall, and we discuss their particular style of using the mobility cane.  Not a lot of people are familiar with their constant contact technique or how and why they use it, so I’m excited to be able to share.

I started seriously working on the video again sometime around December 22.  That means I’ve spent more than a month consumed by the process of filming, editing, scripting, and captioning.  I can’t believe it’s finally over and we can move on with our life.

Next month, on February 8th, Brian and I will be renewing our marriage commitment to each other.  We’re having a big wedding and inviting all our friends and family because we practically eloped the first time around; this time, we want a big party.  I’m not planning anything fancy like your typical American movie wedding; I can’t afford that shit!  We’re going to have a ceremony full of meaning for us, though, cake and coffee to share with everybody, and a reception at home with our own homemade beer and gumbo and yummies.  We’re going to put our love on display for everybody to see and share.

Even though it will be done on a shoestring budget, there is still some planning to do.  I have two weeks now to make sure I have a dress, set up the few decorations I need, arrange for cakes or cupcakes or whatever, nail down the actual ceremony and go over it with my Priests, and book a hotel so we can run away after the reception instead of cleaning it up (Brian insisted!).

After the wedding, I will be giving my first two convention workshops ever at ConVocation later in the month.  I’m teaching two classes: Living Truth in the Face of Judgment and Fighting Perfectionism.  I need to script out the exercises I’m going to walk attendees through, make up fliers, pick and choose the stories I want to tell, etc.

Basically, I’m still going to be pretty busy for the next month!  All in a good cause, though!  Now if the weather would just warm up a teensy bit…

I Am So Sick of Kender’s Match Video

Still working on it.  I’m not the only one; posts about the horrors of making these videos are increasing on our Facebook group for the dog class.  Every time I think I’m nearing the end, that all I have to do is stitch what I have together, I think of half a dozen more things I should capture.  I hate the quality of the video, I hate the quality of the sound especially because you really can’t get a feel for how loud it can be around here.  I lost a bunch of footage from our Foster co-op last week, so I’ll have to redo that this Tuesday.  I just finished processing what I do have from last week, and I’m about to get back to work stitching it together.  In the meantime, here is what they are actually asking us for.  You can see why it’s been so hard, and why I kept hoping a professional would take pity and come save us!

The Handler: While the service dog may be for your child, you must remember that we train parents. It is important for us to know what parents are in the home and what your current and past relationships with dogs have been like. How comfortable you are with dogs and how extensive your knowledge is of them and their behavior or on the other end of the spectrum, if you are not familiar with dogs, are nervous about handling a dog, or if you feel that you may not be able manage maintenance of the dog’s training. Be assured we have worked with families who have little to no knowledge of dogs and those who have worked with them extensively. We just need to know in choosing a dog that the dog is one you can handle, and how we can best facilitate the placement of this dog. Again, our goal is to make the most successful placement possible for your child.

 

So, take a few minutes on tape to talk to us about your experience with dogs. Did you grow up with dogs? Have you had dogs in your adult family? Are there dogs in the home now? How did you relate to any of these dogs? Did you train with them at all? Were the dogs inside or outside? Are there dogs that make you nervous? If so, what behavior is it that does this? What do you like in a dog? What do you dislike in dogs? Do you have a size preference? How do you feel about handling the dog in public? Just tell us anything else you think will help us keeping in mind the two goals addressed above.

 

The Child and Pets First talk to us a little. How does your child do with animals? What good experiences have they had? Has there ever been a bad experience? If so, explain. What type (personality wise) does your child seem to like best? Any dogs that the child is afraid of? Now, start to show us a little. If you have pets in the home let us meet them and tell us about them. Show how your child interacts with them. Do your friends have dogs? Okay, time to invite yourself for a visit or ask them to bring the dog over for dinner! Show us your child interacting with their dog (s). We talk about dogs a lot but show us all pets in the home and show how the child interacts with them. If you have a dog and can show the dog interacting with another dog(s) that would be best. Remember the dog we place has to get along with your dogs.

 

Your family Okay, let’s see the other kids. If they are old enough to introduce themselves and talk a little please let them. How do they feel about the dog? What do they hope for? What interactions would they like to have with the dog? Show us their interactions with family pets, or if there are none, borrow a friends. We would also like to know a little of their personality and things they like to do. Remember the dog will live with your family and family dynamics and interaction will affect the placement.

 

Your House Time to take a tour of the house. Start with the front yard and show us that and the outside of the front of the home before you enter the house. Take us on a tour through the house. Show each and every room. Talk to us. Where does your family spend most of their time? Where does the child getting the dog spend their time? Show us their room in particular. Where do they sleep? Will the dog sleep in bed with them? What does the room look like; what things does the child like to do while in this room? Once we have seen the whole house (include spaces you would not allow the dog and talk about furniture – will the dog be allowed on them?) we will now head out the back of the house to see the yard. Show us your fence or if you don’t have fence tell us how the dog will get exercise. Show us around the outside of the house and yard. The neighbors: What dogs live in the homes beside and behind you. Are their dogs through the fence that may interact with your new service dog? Do the neighbors dogs or cats ever enter your yard? What type of dogs (breed specific), live by you and what other neighbor pets might your dog encounter.

 

Family Activity We need to know how your family interacts during the normal course of the day so spend a day or so videotaping your daily routine. Show the kids playing together, arguing, any normal interactions. Start in the morning and go through say one weekday and one weekend.

Does your family have activities outside the house the dog may attend? Get these regular activities on tape. Sports events? (not the whole thing but a general idea of things like noise level, confusion, numbers of people), Church? Therapy? Routines – such as a daily walk? Any other activities you do that the dog will attend with you.

 

The Child Getting The Dog Okay, now we are ready to really get to know your child! Let’s start with a day in the life of your child. Show us the highlights of the day. Morning! How does he/she wake up and what is the morning routine. Show us how much of the morning routine the child can do for themselves. As you go through the day show what your child can do and what they need help with from physical assistance to emotional support, direction, and behavioral assistance.

 

Okay, what is next? Does the child stay home? What is the day at home like? Show us any therapies that happen during the day. Do you have people who come in and work with your child? Show us what that looks like. How does your child spend their day and what is the typical routine.

 

Now show us a routine that happens but maybe not daily such as a trip to the store. How is that? Does the child enter the car easily? How do they ride in the car? What is your typical routine in public? Does the child use a stroller or wheelchair? Put them in the basket? Keeping a death grip o the child while walking around? We need to see how your child acts in a public place such as a store or mall.

 

Does your child go to school? Get permission from the school to tape one day. Make sure they know why we need the tape, that you will try not to get the other kids, that no one but our staff will see it, and that we discard them after your placement has been made. Show a typical day and include time in more loud or crowded areas such as the halls, gym, and lunch.

 

Meltdowns: This may be tricky. Some parents find the child stops the meltdown when they see the video. You may need to make the video a part of your routine for a few weeks so the child is used to seeing it. Here, more than anywhere, we are asking you to be somewhat vulnerable. We understand meltdowns and need to see them at their worst. We understand the child may strike out or kick, or otherwise try to harm you or themselves and that they can’t help what they are doing. It is a part of the frustration of Autism. Please let us see the entire meltdown, bad language, screaming, physical aggression, slamming, breaking things, fighting, whatever your child does, it is okay, we understand ~you live with Autism everyday. We want to make sure that the dog who enters your house is ready to live with Autism as it affects your child.

 

Behaviors: Let us see any of the behaviors your child has as a result of Autism. For example: repetitive behaviors, self-stimulation, OCD, preservations, noises, physical activities. Anything the child does that are not things a typical peer would also be doing. What are the behaviors you hope the dog will help control?

 

Interaction: Show us how your child typically interacts with others. Does he like deep pressure and hug tightly? Do they prefer not to be touched? Are there things they hate to touch them? Are there things they love to touch and play with? Favorite toys? If they are around animals: Do you think they would want to hug them tightly? Lay or sit on them? Grab their hair, tail, ears, mouth? Can you show any of this interaction?

 

What calms your child? Can you show this? What interactions or occurrences create frustration and meltdowns?

 

Limitations While many of our children have Autism and like issues, some do not and some children with Autism also have other disabilities. Here we want to see your child’s limitations. Any adaptive equipment used? What can’t they do that kids their age should be doing? What physical things can the dog help with? Can your child pick thing up from the floor? Get up from the floor if they fall? Need help with balance? Using a Wheelchair? Hearing impairment? Visual issues? What other physical problems does the child have? Does the child have any medical equipment as a part of their body – such as a trach, g-tube, hearing aide? Please show us anything you think the dog may be able to help with.

 

Therapy and regular medical visits: If your child attends therapy, (speech, physical, occupational, vocational, ABA, other) Please tape record a session of each therapy and ask the therapist to talk about where they thing the dog can help. If the child has daily or weekly medical procedures, appointments please video tape them if the dog will attend.

 

Other: Is there anything else we should see? Anything else you want to tell us, leave us with? Now is the time. Remember we would rather have too much information on your tape then not enough.