Monday, December 19, 2011

Copy Cat

     "Copy Cat!"  I remember the taunt well from grade school.  It was used with highest disdain.  But really, we all start out as copy cats.  It is what children do as they learn and grow, from infancy on.  Think about Peek-A-Boo and Simon Says, both eternally popular children's games.  For the typical kid, that is.  Atypical kids, kids on the autism spectrum, kids like mine, often they can't do it.  Alex would never play Peek-a-boo.  Believe me, I tried.  Every time he freaked out, and tried to hide or get away.  This is one of those red flags.  He never copied either.  I would show him something to try and get him to look, to copy a simple eye gaze, and he would turn aside.  If I went so far to move his head so he could see something cool, he would look down.  If I tried to get him to copy a movement, it would be time for battle.  It is nearly impossible to make someone copy you, this I know from experience.
     Typical kids love to copy.  They will copy and copy all day long.  That is how kindergarten and first grade work.  Of course it is not perfect for every child, or every day, but the majority of time little kids are happy and excited to try something new.  Not my kid.  No wonder he needed a 1:1 person to guide him.  It is not that he was mean about it, it just made no sense to him and did not feel good to do.  He had no "automatic copy" in his programming, and while the other kids were copying he was coming up with something else to do.  Something super easy and comfie, like rocking back and forth, or spinning in circles, or flapping his hands.
      Babies start copying their family very early.  From eye gaze, to noises, to grabbing things, to "Soooo big".  My son did none of that.  He also did not show any interest in things just because someone else was interested.  Interest was more of a repellent.  Conditions had to be perfect for him to show interest.  He needed something familiar, presented by someone super safe, in a very mellow manner.  Newness was a repellent too.  He did not open up a new present on his own until he was about five, maybe even six.  We used to have stand-ins open presents for him on his birthday.  Overall he was a real trooper through many of the rites of childhood.  Things most kids grooved on he just endured.  Birthday parties, organized games, pre-school, carnivals, play dates, kids activity day at the Nature Center.  He did those things simply because we wanted him to, not because they were fun for him.  Zero to eight is a lot of years of not copying anyone.  And it makes it almost impossible to navigate the social world.
     The social world when one is small is all about copying.  Moving from doing your own thing next to another kid (aka Parallel Play),  to actually interacting with other kids and directly copying them is a huge play milestone.  That is where the social world really takes off, and it usually happens in preschool, from age 3-5.  The little kids start to copy each other, and then the bigger kids, who copied the bigger kids ahead of them.  This is how certain things live in the preschools and grade schools, independent of anything else.  The same jokes you heard in preschool are still there, and it is not because the teachers or parents promote them, they are alive and well on their own.  In grade school games live on the playground, no one is teaching the kids to act like a dog and play puppy school.   They get it from older kids, or they get it from each other in a shared consciousness second grade developmental leap.  And it evolves.  I have watched the games the second graders are playing this year on their own get more and more complex.  They copy intricate movements and rules, and then they initiate changes and modifications, present them to the group, and see if they take.  If they take, then the group recopies the new trend.  It is a mini-version of the fashion industry, or the gaming industry, or even scientific research.  In a way we spend our whole lives in society copying what has gone before, choosing to keep what we like, and change what we don't.  Copy and initiate, and copy and initiate some more.  Someone who can't copy is destined to be out of the loop, and it is doubtful that they could be savvy enough to create their own loop.   They just end up alone.
     So, copying is big stuff.  Huge.  And we have been out of the loop.  We, being my son and his fan base.  We make the best of being alone much of the time, and he really does not seem to mind, but we have also been working the last few years to make in roads to the ability to copy, and initiations as well.  I have forced him to play "copy me" games.  We sent him to school to be with typical peers, and have encouraged interaction on all levels.  He has been constantly prompted to use his words and express himself with the adults that guide him in life. This last summer we sent him to camp with the main purpose of helping him to learn to initiate conversation and games with young peers.  He has been through four sessions of Stage Play Theater to learn the lingo of professional copying and how to be a beginning actor/ copier.  And he has been getting it, a tiny bit at a time.  A bright spot here, an initiated conversation there.  A request for something he wants, but has a hard time asking for.  An expression of an emotion without prompting.  Games played with kids at school on the playground without intervention.  He is the tag master.  He is trying hard.  He still can't ask a kid to play a game in class that involves language, or hold a kid conversation, but he is trying and learning.
     And tonight, something that prompted this entire ramble about copying.  As he was getting last snuggles before bed I tapped a four beat on his little butt.  He laughed and copied it on the bed.  I made another beat, and he copied that too.  Four more and he copied them all.  Then I said, "Your turn" and he initiated beats for me to copy.  And more, and more.  We went on for several minutes.  Or maybe only two, but it felt like ten.  Such a small thing, but really so huge.  After years of trying, and giving up, trying again and learning how to prompt.  Being aware of the deficits and trying new ways to approach them.  Prompting again and prompting some more.  Finally a truly spontaneous copycat session, hopefully a marker of a door that is opening without my noticing it before.  Perhaps it was a Christmas Miracle.

Tuesday, December 13, 2011

What the Heck

What the heck should I write about in my Christmas letter?  There are so many options to choose from.  Should I write about everything that has happened in the last year, boring people to death and taking up four pages?  Oh, that would be a problem because I didn't write a letter in '10 so I would have to do Two years and Eight pages.  How about a short and funny poem that encapsulates the whole family?  No, I am just no that talented.  How about writing about the day I write the letter, doing a snapshot of life in our household.  Hmmm, possibly but I can't be sure.  Then there is the question of the tone of the letter.  Light and fluffy, deep and serious, cynical and crass?  Or really confuse them and do some of each.  How about gratitudes?  Gratitudes for hearing returned, learning continued, new jobs, or new wood stoves?  What about horn tooting our collective horns.  There could be business updates, a blerb on volunteer work teaching a financial class, 1000 words about North Shore Community School, or all the hard work our son has done just growing up.  There could also be building project updates, pet updates, and garden updates.  Oh so many options...  I think this year I will go for humor.  The rest can wait.

Sunday, October 30, 2011

A Winter Camping Poem

It is 6pm on a Sunday in late October and I am in my jammies.  Half the clothes in the house are smoke stinky, the garage is a disaster, the car is a mess, and everyone else is already sleeping.  It was a camping weekend, and I am in seventh heaven.

Two nights sleeping in a tent, with frost on the ground in the morning and well below freezing after dark.  I almost choked to death on the first night, and was trapped in the tent the second night, needing to pee but with no toilet paper.  At times I was frustrated, annoyed, and even pissed.  I was poorly prepared, with cruddy shoes, one set of clothes, and no matches or flashlight of my own.  But still, I am on a massive endorphin rush.

It could not have been the great conversation with awesome adults on Friday night around a bonfire, because I was busy losing a fight with our stove while watching Alex and the dog.  It could not have been the fantastic live bluegrass band on Saturday night along with the wild party over at the old lodge, because I was too tired to make it.  So I guess it was just the fact that we were camping.  Camping!

But it wasn't any kind of hard core camping to account for the endorphins.  We were camping at a Camp.  There were actually about eight lodges on site, each with stone fireplace and welcoming vibes.  There was no big push to get to camp, just a nice drive in.  There was no battle for firewood, it was all provided, dry and split by the staff.  I didn't even have to think about food, one of the lodges was also the dining hall complete with excellent chow.  Kevin set up the tent, and broke it down too.  So what provided all these marvelous endorphins?  Why, even when I got home, was I so pumped that I cleaned up and even did many extra chores?

Maybe it was me, my hubbie, our kiddo, and even the dog, out and about in the outdoors.  We hiked a bit, canoed a bit, hauled stuff a bit, and Alex even climbed outdoors.  He made it about 16 feet off the ground, twice what he did last time.  We also played some frisbee, visited the goats and the miniature horse on the grounds, and played around on the dock.  The leaves were crunchy, the air was crisp, and my blood was pumping in a pleasant fashion.  Yes, it may have been all that, but then again, it may have been something even more.

We were camping with a purpose.  We were camping at the 13th Annual Winter Camping Symposium.  We were not alone.  We were not randomly "getting out".  We were in the middle of an event.  40 some tents were spread across the fields and into the woods, and every one of them had a chimney sticking out of it.  160 people were pre-registered.  160 very special people.  The Symposium is a gathering of the nutbags of the mid-west that like to go out and camp all winter long.  The colder the better. The snowier the better.  And best of all if you haul it yourself at least five miles into the wilderness on a toboggan.  The tents are white- to blend with the winter landscape, and wood heated- to make it survivable.  Not just survivable, but fun.  Crazy fun.  There is something just a little off about camping next to a wood stove in the middle of winter.  It is not a pursuit for the faint of heart, but it is worthy.

It is an understated crowd that gets into this kind of thing.  Everyone wears wool, the older the better.  The more the outfits are mis-matched, the better.  The longer you've been around, the better.  And the less you have to say for yourself, the better.  Lots of white hairs, and grey beards, and knowledge to pass around.  This years Symposium was the biggest ever, with presenters Thursday through Sunday.  You could join classes on fires and stoves, on sawing and splitting, on knife making and mitten making and winter travel.  There were edible plant walks, tent tours, and good old nature hikes.  Plus having fun with kids at minus 26, and kitting out your gear to run electric if you want to hit the Colorado ski slopes for $20 a night. There was a camp cook off that culminated in the Golden Spatula award, and many door prizes given away, including sweet axes, spiffy saws, and nifty wool hats. 

Alex did really well.  He attended last year with his dad, while I worked at home.  This year we all got to attend.  Kevin left on Thursday to teach classes, help organize, and get us set up too.   It was a rough go on Friday, because Alex and I packed up and headed to camp after the Halloween parade and party at school.  Otherwise known as chaos on a stick.  I did nothing to plan ahead, so just threw together most of what we both needed for clothes and a few snacks.  It is surprising how much energy that can take.  By the time we arrived I was wreaked.  That night, when the stove would not cooperate, Kevin was gone, and Alex was cranky I was sure the trip was a mistake.  I allowed so much smoke to pour out of the stove and into the tent I was worried we might pass out.  Fortunately tents just aren't that air tight, and the next morning I determined to tame that stove.  By Saturday night I had it in hand, and the tent was so cozy I sent Kevin off to the music while I snuggled in with my book and watched my sleeping boy.  He had hiked, and climbed, and canoed like a champ all day.  He settled in easy to camp life, strung up pumpkin lights in the tent, and encouraged me in my quest to tame that stove.  He had no trouble eating in the dining hall, attended a few seminars with minimal complaints, and made friends with the other kids running about.  We hope that next year they will all start where they left off and make a junior nutbag pack.  All they have to do is love the outdoors, want to play with fire, and have a fascination hatchets and tents.  That should not be a tough sell.

So, I had a great weekend.  I got to meet all the folks Kevin has been talking about all these years.  He has been going to the Symposium for over six years now.  Every year it landed on my work weekend, and every year it was a royal pain in the butt to schedule Alex care.  Kevin is always stressed leading up to the Symposium because he sells gear there and presents as well, and then comes home and is a wreak.  I had come to hate it because it meant nothing good to me.  Sure, Kevin had some good stories about folks I'd barely or never met, and he always said I'd love it, but I had my doubts.  Not even doubts really, I just didn't have any experience to tie things to.  All that has changed.  Now I have met them, eaten with them, taken their classes, and toured their tents.  I am getting up on the skills, and falling for the sport.  Next year I plan to present a class, and help make a real kids and family program. I think I may be hooked.  We are planning to winter camp for real on December 10-11-12, and February 4-5-6, and I can barely wait.

My First Winter Camping Poem

As the last of the leaves fall from the trees and the winds begin to blow,
the temps will drop and the flakes will fly,
and I will be ready to go! 

Tuesday, October 18, 2011

Ketchup, and Mustard

I have a new little friend.  He is pokey in the halls at my new job, and always lagging in the line.  I often find myself saying, Catch up, catch up!  And I now know why his teacher from Kindergarten dressed for Halloween as "Ketchup... and Mustard!". 

So, there have been quite a few changes in my life, and Alex's too.  I jumped ship at the Hospital, swam away from my pirate compatriots, and landed on the calm island of North Shore Community School.  This is my son's school, that I have been in love with since 2009.  I came up with the crazy idea last spring at Alex's IEP meeting, where we hammered out the plan for his education for the next year.  It was such a great meeting, with over a dozen excellent professional folk, that I walked away saying, "I gotta work here some day.".  Then it hit me.  There would be a special education position opening up in my son's grade.  Would it work?  Could I work at the same school, in the same grade?  I knew they were planning to split up my little friend and my son, so there was no danger of being in the same classroom.  I started a quite interview process with everyone I knew at the school to see if they thought I would be a good fit.  All went well.  It was a long spring and summer, wondering if I could pull it off, if I would get hired, and if I could really leave the hospital.  It seems the answer all around was yes.

It was surprisingly hard to leave the hospital.  Even though it was a super high stress position, with weird risks and crazy situations popping up all the time, I still had made a home there.  True, the family was very dysfunctional.  VERY.  But I had my peeps.  My survival network.  And the worst thing was knowing I'd be abandoning them.  The second worst was not knowing if I'd be abandoning them or not, since it took forever for the interview/ hiring process to happen.  I did not know the final answer until I was on vacation, on the 15th of August.  I went from nervous wreak, to elated abandoneer.  And then the bubble burst.

At exactly the time I was getting hired, my husband was experiencing sudden hearing loss.  He woke up right before the 15th of August with vastly reduced hearing in his left ear, with replacement ringing, buzzing, and pinging that just about drove him nuts.  By the time my hiring was sinking in, we were off and running to Doctors, Audiologists, ENTs, and MRI nurses.  When he wasn't having invasive procedures done, he was coping with the loss of half his hearing and the addition of all that replacement noise.   Apparently the ear does not like a vacuum, and replaces lost hearing with random noise called tinnitus.  Random, bizarre, maddening noise, that you eventually just get used to.  The Ear, Nose, and Throat guy we trusted most said Kevin had a 20% chance of getting enough hearing back in that ear that he could possibly get a hearing aid.  It was a random virus that was attacking his nerves, and this happens about 4,000 times a year in the US.  The amazing end of the story is that he got back almost all of his hearing.  After searching out a best practice solution, Kevin got a steroid shot into his eardrum within ten days of onset.  This did the trick, and he now has loss in a 15% range.  We will know in the next few months if he should go for a hearing aid for that range.  For now we are simply grateful.

By the time that started to resolve I was into my last stretch at the hospital, that morphed right into my first days at North Shore Community School.  I was a bit shell shocked, but happy.  I was hired as a Paraprofessional, and I actually look after two kiddos on the Autism Spectrum in my boy's same grade.  I made the transition pretty well.  Now, six weeks later, I am finally getting a good handle on my new job.  There have been some challenges, but no kids with Hep B have spit in my mouth, and I have not had to tie any children down with leather restraints.  It is almost heaven. 

At home we are settling in to the new routines as well.  I have much less free time than before, but I don't really need recovery time from my new job, so it is all good.  We have a ton more family time, and have had quite a few adventures already.  This weekend is a long weekend off, and next weekend we are going "winter" camping in our wood stove tent while attending the annual Winter Camping Symposium.  My next post will likely be about Alex, and what I am learning about school and Autism.  I will just say that it is all good, and I am on a positive learning track.  Plus his classmates are adore-able, and I am also in love with second grade in general.  That is all for now, I hope everyone is having a good Fall.  All the Best- Beth

Tuesday, June 28, 2011

The Summer Alex Plan

I may just be deluding myself, but here is the plan for the summer for Alex.  Learning to initiate socialization.  Alex has learned so much over the last few years, and this is one of the final keys to a bright future.  So far we have taken on: emotional ties to safe adults, emotional regulation, communication with adults, friendships with a few select peers, activities of daily living- dressing, bathing, eating, brushing teeth, zipping zippers, etc., navigating around and responding to same age peers, typical classroom participation, regular school work, and empathy and understanding emotions.  Taken them on, and still working on most of them, with general great success.  So much success that it is time.  It is time for him to blossom into initiations.

Initiations?  Sounds so clinical, but it is key to opening the whole world.  Without initiation he is dependent forever on assistance.  Without initiation he cannot be truly creative.  We may be jumping the gun a bit, as he is not a really great copier, and copying comes first on the developmental ladder, but he's his own man so why not.  He so wants to be around his friends that I can't help thinking it is time.  But how to do it?  He can initiate with his closest and safest friends, so how to broaden that out?  Make more kids safe?  With the help of Congdon Creek Summer Camps.

The camps are perfect.  Geared to 3-9 year olds and based out of the preschool he attended when he was 5, they play all day long.  They play, and hike, do projects, and play some more.   It is a gold mine of communication opportunities.  The staff is top notch, and they handle everything that comes along with style and grace.  His particular teacher also has a special education degree, and was his teacher at 5, and also did her internship in his 4 year old ASD classroom.  Can't get much more perfect than that.  When I met with the staff before summer to talk about encouraging initiations, and also good motivation strategies and using multiple cues with him, they didn't even blink.  They do all that and more, on a daily basis.  Including promoting positive social skills with all the kids. Heaven. 

Alex has been at camp for two weeks now.  He has met up with old friends at camp, and made new friends too.  The staff keeps me updated on his progress, and he is making gains every day.  They are prompting and he is responding...and initiating.  He does not just do his own thing anymore, and it is not a royal fight to get him to interact with the kids.  He is participating fully, and developing his own style.  He is king of the monkey bars, and loves to read with and to other kids.  Yesterday he spent much of the morning playing "puppies" with one of the girls, barking and snuffing noses.  And the other part of the morning he was discussing Kung Fu Panda 2 with one of the boys.  Ahhhh, Bliss. 

What you have to understand is that when Alex was 5 he could hardly be in the same room with the other kids.  He maybe talked to two kids on his own all year.  He had a paraprofessional with him much of the time, yet could not connect.  He was very handsy with the kids, it was his only way to communicate.  He would roll on one girl that he particularly liked.  He always looked like a deer in headlights.  The staff put in major work just for him to participate and partially work on projects.  His desire to be with kids blossomed that year, but there was very little appropriate interaction.  He was in his own orbit, getting closer and closer to the others, but still miles away.   It is a joy and a delight to see how much he has changed, and to watch him fully participate.  Yesterday he asked his dad if they can make a chocolate cake for the staff... he happily agreed.

So, there is the meat of the Alex summer.  Four days a week he is at Congdon Creek Summer Camps.  The rest of the time is dedicated to playing outside, camping trips, acting class, kayaking trips, play dates, reading, math, writing, stories, baking, eating good food, biking, building a rocket with his dad, and putting the coffee on in the morning.  Santa Barbara may not be in the cards for this summer, but with the help of their ideas (initiations being a big one) and books, I think we will do alright.

Friday, June 3, 2011

Locked In

If you know any Autistic kids You Must Watch This

Wow, this is it in a nutshell.  I cannot help but think of Alex first when I see this.  Granted, this girl has a much larger challenge than Alex, but challenge is challenge.  It is profoundly hopeful, and also sad.  "Never give up.", they say.  That is much easier said than done.

My heart is cut to ribbons every day with my little guy.  Every day.  Cut to ribbons with fears for the future and the past.  Fears that it will not turn out all right.  Fears that I did things very wrong in the past that can never be undone.  Fear of the darkness that gathers at the edge of consciousness and doing.  Fear that we are not doing things right, right now, and will lose our way in the future.  When I see behaviors that are outside of the norm, I fear he will never be truly accepted.   Or, more accurately, that since he IS accepted now and has many wonderful people in his life, both little and big, perhaps that will vanish in the future.  The fears gather, and multiply, and prowl just outside of my consciousness.

And then I hug my Alex.  Or he gives me a kiss.  Or I pick him up and give him a big snuggle.  Or he shows me something, anything.  Or I look at his picture, or artwork, or think of his brave little self.  Any of a hundred things that happen every day, and my heart is healed.  Cut by fears, healed by love.  Love shining out of him, and through me too.  Love of others who hold him dear in their hearts as well. 

It is a rough road, having a kid with a disability.  Rough indeed.  But the rewards are great too.  Amazing.  More than one would ever expect, until you know a brave little soul like Alex.   Or even one quite different.  Fighting a different battle, having different challenges.  All of the brave kids.  Some of them still locked in.  Locked into their challenges, into behaviors that mystify, into worlds only they know.  "Never give up.", it is difficult indeed, but this girl, Carly, is showing us another way to follow that most difficult path.   And the rewards are clearly great.

Friday, May 27, 2011

Deer Attack

Holy Smokes, my dog could have died.

There I was, enjoying a beautiful walk along a creek in Duluth, Minnesota, in the heart of a city neighborhood.  My dog, a fluffy border collie, and my friends little mix dog, got scent of a deer.  This happens a lot in Duluth because we are overrun with them, to the point that they are almost vermin.  Ask any gardener, or person who has struck one with a car or bicycle, they are a hazard.  Little did I know what a hazard. 

So, there I was, trying to call my dog off the scent.  I had seen the deers tail, and it was only about 20 feet away through thickish brush.  I hoped I could call Jack off, rather than the deer running forever and having to wait for him to give up and come back.  There were no roads for several blocks, so I figured it was safe enough.  Little did I realize that the deer was psycho.

The little dog came back, but Jack did not.  I put a bell on him for just such a situation, and I could hear that he was quite close.  Next thing I knew, the deer was back.  And Jack was on it's heels.  Then the deer turned towards him, and I figured he would run.  He did, but only a little way and then circled back.  Next thing I know the deer is charging him.  CHARGING, like it wants to kill him.  He scooted off a bit, but circled around again.  At this point I was getting seriously worried and seriously involved.  The little dog had the sense to ditch out on this situation, and was safely in her owners arms.  Not my dog, he was hanging in there for no reason I could figure out.  She was charging, he was dodging, and then he was going back for more.  I was flummoxed.  What you have to realize is that my dog is a total wimp.  He is scared by every dog he meets, as well as puppies, and even bunnies.  He has never attacked anything in his life, beyond a mad dash at a squirrel, and why he picked this moment for glory I will never know. 

So there they are, charging, dodging, and finally faced off only about 15 feet from me.  And my dog is not doing the intelligent thing, as a 200 lb animal with very sharp hooves and a manic look in it's eye stares him down.  He's looking like he is going to run at it again, and she's looking like her dearest ambition is to put a hoof through his skull.  I had already been yelling to him to come, and now I started yelling at her to go.  I ran off the path and into the brush, waving my arms, swearing, and telling the deer to go away.  Okay, I suppose I was screaming at the deer.  And at my dog.  I recall calling him stupid, and telling him to come, once again.  He crouched down, which was good, and she looked at me with that same skull crushing look, which was BAD.  Having never been scared of deer before, I decided not to start now, and raised my arms over my head while making loud, slow progress towards her.  She still did not move and kept giving me that look.  Fortunately for me and the dog he decided to slink a bit closer to me, and while keeping any eye on her I grabbed him, leashed him, and dragged him out of there.  She still did not run, and still kept looking at us with attack mode in her eyes.  We left, she stayed.  And I began to figure out if my dog had gotten hoofed in all the charging and dodging.  I didn't think so because there had been no yelping or whimpering, and he is a big yelper and whimperer.  But still, he has a lot of fur, and she was right on top of him, so a ways further down the trail I stopped to assess him fully.  No injuries.  No getting off the leash either, for a long long time.

So, now it is mental assessment time.  It was a strange situation.  One I have never run across before, and I've met lots of deer.  My guess is there was a fawn hidden around there somewhere, or maybe even two, since she was so pissed and the travel pattern of dogs and deer was very random.  That seems the most likely scenario, the other being that she had some form of deer rabies.  There was no foam at her mouth, and she looked VERY healthy.  I am going to go with option number one.  But who knows, the herd in town has gotten so huge and out-of-control, maybe they've just decided they own the place.  Whatever the answer is, I will probably never know.  But what I do know is that my dog, my sweet, shy, intelligent dog, is not getting off his leash for a very long time.

Monday, April 11, 2011

The Autism Superhighway

I wrote a post awhile back about being stuck.  Being stuck with the Autism aspects of our son, feeling like there was no progress in key areas.  Well, at the time I posted I was getting un-stuck, and we have now been driving down back roads at a good pace.  I have had a feeling of making progress, and life with Alex has continued in it's amazing and sweet way.  Things may be getting a lot faster soon.

There is a book that I call my autism bible.  It is titled Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child's Life.  It is miraculous, but it is not a miracle cure.  It is research based and driven, and it contains a whole host of concepts and ways of dealing with the behaviors and deficits of autism that results in massive developmental gains.  Basically how to catch up with his peers, and how to stay with them, rather than living in a separate and isolated world.  I have read and implemented strategies from this line of research for years, and feel it is a very grounded and sound.  The results have been excellent for us.  Helping us address problematic behaviors of the past, such as biting, hitting, and refusals of most things, as well as helping Alex to learn key communications abilities.  But reading the research and implementing it all in isolation has been daunting, and Alex keeps changing so there are always new challenges.  Alex's development has been steady yet uneven and seems rather slow.

We may soon have an opportunity to jump on a superhighway.  The Autism Superhighway.  The Overcoming Autism book was written by a researcher.  That researcher, and her research husband, Lynn and Robert Keogel, have an Autism Center in California.    That Center offers intensive clinics for entire families, to learn how to implement their program and hit the key areas of motivation, initiations, and self-regulation.  It is a form of Applied Behavioral Analysis, with lots of twists and lots of fun.  It is not drill therapy.   The Remote Family Program would consist of a thorough assessment of where Alex is at, as well as super charging our ability as parents to implement fun strategies to move his development along.  Five days on the campus of University of California- Santa Barbara, with five hours of therapy, training, and education a day.  It is for Alex, and my husband Kevin, and myself, and we could also take any interested professionals with us.   It would be intense, expensive, and worth every penny.  There is also long term follow up, and support.  Plus we would likely go through the program with other families with kids at the same level as Alex.  Wow.

My head is spinning over the whole thing, and my brain throws up a whole host of road block and fears, but in my heart it just feels right.  Kevin is all for it, and we are in contact with the Center as they formulate their summer schedule.  I don't know how this is all going to work out, but am super excited to do what I can to make it happen.  More updates will come along as we hear back from the Center. 

It is funny how things come along when you least expect it.  I have been focusing in other areas and then this arrives, as if on the wings of an angel.  We will follow where it leads, and try to keep up the good work in all other areas as well.  Wish us luck!

Thursday, March 31, 2011

Winter into Spring

As winter turns into spring around here, everything seems topsy-turvy.  Letting go of the long winter, and trying to look forward to the spring and summer, has brought on some regrets and much musings.  I regret that I did not embrace the winter fully, even though it was excellent for skiing and outdoor pursuits.  I let my fitness go and am now clawing my way back to where I was last October.  Geez Louise, if only I had just kept going a bit with fitness...  I am in the messy middle of our Financial Peace University class.  Really coming to grips with where we are financially, and all the decisions that have led to this very spot.  Yikes, that is not very fun...  Thinking about our business I consider all that we have not done for that as well; budgeting, planning, and general management.  Sigh....  My work has been particularly challenging lately, as we are chronically short staffed, sometimes three or four short.  And while this has led to good decisions for picking up extra shifts, I have not felt like I have been doing a great job while juggling all the extra duties.  Plus the acuity has been high, and my last shift had me dealing with a violent offender, which is never fun.  Harumpff....  I am looking forward to warm weather and activities, but nervous about the time and skill needed to finally complete the long awaited attic project.  What if I do all my parts wrong... 

That's about it and those are the major brain twisters.  I do always have the blessing to hang on to that my wonderful son Alex is in the best school in the whole universe.  And I am married to a fantastic guy.  And I have some of the best friends in the whole world.  And I can back surf.  Other than that, does the rest really matter?

So I try to hear the regrets, and use them to plan for the future.  Learn from the mistakes and mis-steps, and move on.  It is hard!  But maybe hard work has it's own rewards.  Spring is truly right around the corner, things will green up over the next few weeks, and as the sun gets stronger I will leave these winter blahs behind.  Time to plan the garden, set up a few camping and outdoor adventures, and get to work on that attic...     -Beth out

Tuesday, March 22, 2011

Kick A** Lake Superior

I just got back from a trip to the Lake.  It is 30 degrees, and blowing at about 40 miles an hour.  A great day to be out!  You know, I sometimes wonder just why I live in Duluth.  Between 20 below zero temperatures, a fair amount of gray, cloudy days, two mud seasons, and bugs in the summer, an outdoor girl can get a little down now and then.  Days like today bring me back to why I love it here.  There are unique opportunities that you just don't find many other places.

The lake has ice ridges right now.  If you read my  Lakeneering post, you know what I am talking about.  Well, today the ridges were getting slammed by waves.  The wind is up, and the waves are high.  In fact they are mountainous.  Mountainous waves crashing onto mountains of ice.  The spray was flying so high that I first spotted it when I was driving on the highway, about six miles from the beach.  An impressive and unusual display, and I had to get closer.  So close, that I allowed my errands to detour me to the Tot Lot beach.  Out the car, and I realized it was going to be a challenge to keep my feet, as well as keep my hat on my head.  I was decked out in wool and down, in many layers, and my happy dog had his substantial fur on.  Oh, for the camera I forgot.

We headed straight out to sea.  Over the ice and sand, all whipped into strange shapes the weeks before.  No even footing whatsoever, and wind so strong I had to lean into it.  Jack, our border collie was in seventh heaven, it was like a Scottish day on crack.  Not only was it blowing sideways with pelting rain bits, but every wave crash sent ice pebbles and spray into the mix.  We got up on the second to last ridge line before ice met icy water, and it was a sight to behold.  The waves were pounding in behind the first ridge line, and every third one would throw both spray and wave itself over the top of that ridge, washing down the back with small rivers of water and ice chunks.  No one  in their right mind would go there.  The second ridge line was just fine, with no danger of hypothermic deluge, just the threat of slipping on sandy ice and banging a knee.  I only did it once in our 45 minutes out.

I made a deal with myself a few weeks ago, that I would work hard to get out at least 30 minutes a day.  Out the door, outside, out in the woods, or wind, or water.  You'd think that wouldn't be so hard, considering I used to spend 10 to 24 hours a day outside.  But life changes, and what once was a given can become a challenge.  Today that challenge was met with a huge smile.  We had fun, Jack and me, getting blown about on the ice ridge line.  We went all the way to the canal, and I had the supreme pleasure of standing on the lake side of the locked canal sidewalk gate... in the lake itself, so not really breaking the rules.  When they close that gate it means the waves are too dangerous for people to be on the canal sidewalk.  It goes without saying that people are not supposed to be IN the lake right next to the sidewalk either, because usually you'd be swimming and in strong danger of bashing your head in on the canal sidewalk wall.  Not today, as it was frozen for another 20 yards out on my side, so I stood next to the sidewalk, on the frozen solid lake.  It was strange to look over the canal walls to the unfrozen channel with waves rolling through, and although it was false naughtyness, it still felt good to stand where you usually can't.

Jack had a riot playing Dog-of-All-Weather.  And I remember, once again, why I live in Duluth.

 This photo was taken by Sherry Rovig.  It was actually a point break about 12 miles from where I was hiking called Stony Point, but it's from the right day, lake, and storm. And a beautiful pic, -Thanks Sherry!

Sunday, March 6, 2011

Mo' Money

Time to talk about money again.  I have blogged about money a fair amount, and set a goal last year to teach a money class some day.  Well, that day has come.  We have been teaching the class for over a month now and it has been great.  The class is called Financial Peace University.  Financial Peace, two words that don't go together.  But really, they can.  You just have to be weird.  Never one to worry about that, I have been embracing the weirdness of coming to terms with money for a long time now.

I found my first Dave Ramsey book almost a decade ago.  Financial Peace.  It had a hopeful message and sound principals.  Most money books are hard to read, but not this one.  Hard to do, yes.  But not hard to read.  I read it first back in '02 and got inspired.  We got on the envelope system, started tracking expenses, and worked to live below our means while cutting out credit.  Somewhere between '05 and '07 Kevin shot our last credit card.  Yes, I said "shot".  He canceled the account once it was completely paid off, confirmed that it was indeed a closed account, hung up the phone, and shot the card twice.  Then he mounted it like a deer, with antlers and everything.  It hangs in our living room today.

We got the principals down, but the actual doing ALL of it has come slowly.  Dave does a seven step plan, and we languished on step two (pay off all debt but business and home) for about eight years.  March of last year we paid off my student loan, which was our last personal debt, and we were finally done with step two.  Yahoo!  It felt amazing.  So amazing that I got serious about sharing it with others, and my pastor liked my hair brained idea too.  Kevin was more than willing to go along with it, so through our church we are teaching our first Financial Peace University class.  This has really upped our game, because now we have to do everything for real.  All the parts of the plan, including income planning, asset management, and the dreaded budgeting.  We have half budgeted for a long time, knowing mostly where our cash is going, but not keeping an eye on the income, or planning ahead for future expenses. Christmas has snuck up on us every year.  And we never had a real car repair fund, even though it is guaranteed we will have breakdowns with the age vehicles we drive.  "Let's just hope for the best" ain't gonna cut it any more and we sat down to hammer out a real budget last month and this month.  It was scary at first, but has already gotten easier.  We are finally getting a handle on complete budgeting, and it is actually quite liberating.  Really.  I swear.  It is so liberating we will be doing it every month.  Told you I was weird.  But hey, average means broke, so I am totally going for weird.

And now we are about to knock out step three.  With our upcoming tax refunds we are going to completely fund our 3-6 month Emergency Fund.  We had been worried about whether or not we would get a refund (due to poor budgeting we didn't really know), and then trying to wiggle out of doing the right thing.  But through the complete budgeting process we have seen where we stand, and it helped clarify where we really want to go.  Trips are nice, but life goals are better.  We are going to  complete the Emergency Fund first, then go on to a few little goals with what is left while leaving our budget in good shape for the rest of the year.  Christmas will NOT sneak up on us this year.  We are setting up appropriate savings (like for the car) and now have income goals to shoot for to keep our budget where we want it, and to build it for the future.  We are managing our money and telling it where to go, rather than wondering where it went.   Financial Peace... it really is possible.  Next comes climbing step four, Retirement Funding and planning.  Not as scary as it used to be, and now way less likely to sneak up on us.  Well, that's it from the money desk.  If you have been wondering where I have been, now you know.  Money land.     Happy financing, people!

Friday, March 4, 2011

Old Dog, New Tricks

I am working on upgrading my blogging skills.  More specifically, my blogging photo skills.   I am terrible at getting pictures up, and it is time to improve in that area.  Just figured out how to raid photos off a friends Facebook stash, so will likely be doing more of that (see previous post with new photos).  Now if I can only figure out how to delete old photos off my camera, add photos to the computer, and upload them where I want them.  And organize them too.  Oh wait, I know HOW to do all that, I just need to figure out WHEN.  I guess that is my next new trick...

Wednesday, March 2, 2011

Ice Lakeneering

It is Ice Lakeneering season.  Much like Mountaineering, you go to a specific, beautiful, and awe inspiring place to climb and clamber and reach a zenith.  You need warm gear and a stout heart. And a friend to go with you, for safety and fun.  Plus there is climbing, ice, and danger.

There is a special ridgeline to climb on in Duluth right now.  It will not last, and few will challenge it.  But those who do will reach a peak.  Or more than one.  Yes, Lake Superior is frozen, in yet another unique and beautiful way.  On Park Point the snow and ice and water have combined in an unusual way.  Through freezing temps, wind, and wave action, the lake has created a frozen landscape that stretches about a quarter mile out from the beach.  There are several tall ridges of ice and snow that you have to overcome and several planes of cottage cheese snow to cross to get all the way out to the water.  Almost cliff like in places, the ice takes on may beautiful forms.  Once to the water line you can watch the water and ice-plates slowly rise up and down, like the lake is breathing the frozen air.

This is it.  Today is likely the last really cold day of winter.  5 degrees and below zero wind chill.  It only gets warmer from here, and the Lakeneering will not be stable for long.  Like many things in Duluth, you have to get it while it lasts.  Get out there people!

 Thank you, Kerisa, for fun, motivation, and photos!

Thursday, February 10, 2011

Seventeen Below

It was seventeen degrees below zero this morning when I got Alex on the bus.  Cold enough to try to make some snow, but alas, not quite cold enough.  To do so you take a boiling hot cup of water and throw it in the air, if it is cold enough it comes down as snow.  Too warm, and it only splits into steam and water.   It was too warm.  So warm that it made it up to five degrees above zero by 10am.  Bummer for making snow, but the perfect temp and time for an adventure.

Jack and I went out to hike a river.  There is a beautiful little one not far from my house called the Lester.  It was so bright and sunny that it almost hurt my eyes.  Dazzling as we crunched down the banks and into the main river, all sparkly with zillions of refracted snowflake diamonds.  The sky was blue, the rocks a mix of brown and red, and may an evergreen all around.  Very beautiful.  And exciting too.  To be out on a river, walking over the water, and hearing it trickle and run below your feet.  The sound of running water under snow and ice is hard to describe, unique and electric.  I have fallen through the ice in the past a few times, which is also unique and electric.  Jack had a riot.

He ran and ran.  Bounced and explored.  Up the river banks, and down again.  Through the woods, and following the game trails.  Then back to the river bed to run ahead.  He is beautiful to watch as he runs, and glides, and occasionally prances.  He likes the snow.  And not a single snow ball in his paws today.

It was good to get out.

Thursday, January 13, 2011

Gaining Traction in Autismland

I have been feeling very stuck in Autismland.  It is a feeling that comes along every so often, like being stuck in the snow in your car.  You hit the gas, wanting to go somewhere, and the wheels start to spin and spin.  Maybe you inch forward or back, but you keep falling into the hole you are spinning, deeper and deeper into the snow.  You can't get to the bottom to get some traction, and pushing on the gas pedal is frustrating and infuriating.  At this point I usually hit the steering wheel and scream, which are almost totally useless activities.  Except they keep me from breaking something nice and fragile, like the turn signal or wiper thing-a-ma-bob.  Which is what I really feel like doing.  But before I get to that point I have a very fast and deep debate with myself.  "I'm stuck.", "No, I'm not, I'll get out of this."  Try to drive again.  "Crap, I'm stuck.", "Noooo, I refuse to be stuck, I will just gun it a bit."  Try to drive and really dig in.  "Shit, I'm stuck!"  "No, you're not.  Just do that same thing again, just a little different."  And so it goes, with the two parts arguing.  The truth seeing part and the avoidance part.  The part that is willing to seek help, and the part that would rather die first.  The difference between driving in the snow, and having a kid with autism, is that you can have this debate for a very long time with your kid.  You can spin your wheels while being deeply frustrated and wanting to scream, and at the same time delude yourself that things are moving along fine.  That is where I have been for a while.

All this does not keep me from loving my son.  And appreciating him.  And playing with him, doing homework, going out and about.  I have been doing all this and more, but at a deep level wanting to scream.  Because part of me has known we are stuck.  Spinning those developmental wheels, or at the very least, not getting the traction we could have.  Should have.  And here is the crux of Autism.  It is all about the development, or lack there of.  And development, Development, with a capitol D, is so damn hard.  Why?  For two reasons.  One, it is a moving target.  And two, typical kids do it naturally.  They proceed from one thing to another naturally, without any fallout.  As babies they go from cooing, to babbling, to using vocalizations to get their point across.  From looking at that thing they want (and everything is fascinating), to crawling over to it, to walking to it, to climbing for it.  And they are exploring all the time, first home, then the close in world, then the outer world.  They just naturally start asking questions about everything they want to know about, and they want to know about it all.  Not so with autism.  Everything is fearful, and many things appear to be painful.  The senses do not integrate well together, so most things are very confusing.  Anything new is to be immediately rejected.  Physical tasks are not a joy, they are too hard.  And that is where you start, with a child with autism.  They live in their own world, because the rest of the world sucks.

But that is also what makes children with autism such brave little beings.  Because even with all this, each of them find their loves and safe places in the real world.  And each of them can learn, really learn, everything they need to know.  My little guy also has a mild case of autism.  His wiring is off, for sure, but he has taken readily to all the interventions and assistance over the years.  When the work is right, he grabs on and goes with it.  And we have made great developmental strides.  He has now hit almost all of the milestones of childhood to his current age.  He has real friends that love him deeply in their grade school way, and he loves them back.  He is totally affectionate at home.  He loves going to school, and has marvelous teachers, helpers, and classmates.  He is learning well, is an ace speller, and can swing the monkey bars like noone else in his class.  And yet.  And yet, that feeling has been on me for weeks, if not months now.  Stuck.  Stuck in his development of his social skills, where his friends and classmates know and love him  but he cannot keep up with their increasing complexity.  Love is only enough if I am satisfied with him being the class pet.  Beloved but limited.  Good for petting and playing, but you can't have a real conversation.  And that is the crux.

Conversation.  True communication.  Where both parties show an interest in one another, and move off to build something together.  Be it a game, a shared story, or a trek through the woods.  I can give my son experiences, throw him together with other kids, make a container for safe sharing, but I cannot make him initiate.  I can demand that he respond, but I can only prompt him to initiate.  "Say hello", I whisper to him, and he will gladly and genuinely say hello.  We have been working on that one for a long time, and as a matter of fact he is quite good at greetings and will often initiate them.  But greetings are not the only forms of communication, they are the tip of the proverbial ice berg.  There are also good-byes, questions, comments, sharing of materials, sharing of ideas, requests, sharing feelings, telling stories, and play.  Play is so complex that it makes the head spin.  Yet it is also so basic.  As are all these forms of communication.  And they all take initiative.  And initiative is what kids with autism do not have, where social activities are concerned.  They can initiate for needs like food, favored solo activities, and safe adult contact, but social activities are a whole different ball game.  Social initiations, appropriate ones, are one of the core deficits of kids with autism.

And this leads me to my break through.  Autism affects every area of a little persons life, and yet it all stems from three core deficits.  I have been spinning my wheels through all these affected areas, while not having a grasp of the traction points I am trying to get through to.  Enter serendipity.  Because of Christmas break Alex has become more disregulated than normal.  Christmas makes all children go insane anyways, due to it being so fabulous, and this year Alex was in the full swing of things.  We spent lots of time out of routine, and he watched way too many movies.  For him, that means six in a week.  And he got stuck in movie land.  Stuck repeating dialog.  Toy Story dialog to be exact.  It did, and did not help, that he got lots of Toy Story characters for presents too.  There is more potential for creativity with toys, but it also seemed to drive him deeper into scenes and dialog.  Why?  Because he has an amazing memory and can repeat all three movies.  So he can skip from one scene to next, and back again, endlessly.  Endlessly amusing himself with all the words and situations, all by himself.  He would bring others in by trying to get them to repeat the parts too, or asking them questions about what came next, even though he already knew the answers.  At first this didn't bother me, because it was showing creativity, and an interest in complex social situations, but as certain themes started to repeat it all took on more of a self-stimulation feel.  And it got more and more repetitive and ingrained.  I couldn't get any traction with him, and I started to get that feeling of wanting to beat my head.  Just then, I looked up.  I looked up into my Autism Book Cupboard.  I didn't have my usual go to book, my bible of autism, because I had loaned it out.  So I looked up at the rest of them, and pulled one down that I had not looked at in years.  I read the table of contents and started to get excited.  I dove in, and it was like a miracle.  It had the answers.  All the answers.  Every question I didn't even know I had been having.   The truth finally hit me.  I'd been stuck.

I'd been stuck, and telling myself we were fine.  Spinning deeper and deeper in the snow, deluding myself that we were getting somewhere, until finally we'd spun so deep I had to look for help.  In some ways I have been stuck for a couple years.  Pleased with his progress at school and with friends, but still troubled deep down because I didn't have a focus.  I didn't have a clear picture of exactly what to do.  And all my experts were gone.  Right through Kindergarten I could rely on Tahirih at the Scottish Rite Language Clinic to be my rock.  She regularly met with both me and Alex, had been to our home and all his school settings, and we could trouble shoot anything.  But he graduated from the program last summer.  School is fantastic, but they are school based.  At home we are on our own.  I had my autism bible, but forgot to look at it.  Then I loaned it out.  I didn't know how alone I was.  We had come to a stand still on a bunch of issues at home.  Food. Dressing.  Creative play.  Getting ready for school, outings, even bedtime.  Resistance to everything was on the rise, with Alex digging his heels in and wanting to do the same things over and over.  I had stopped trying to move him forward on anything, stopped teaching, stopped trying very hard.  Spin, spin, spin.

And then came help.  In the form of a book called Pivotal Response Treatments for Autism.  It is actually the underpinnings and research studies that resulted in my bible, Overcoming Autism, and it says some very important things.  Things I had not noticed before.  "...autism itself may be a much milder disorder than previously suspected...many of the seemingly severe aspects of the disorder may be side effects resulting from abnormal development.", emphasis mine.  And further more, " Some of the core areas that, when treated, seem to produce especially large... gains are:
     Motivation to engage in social-communicative interactions
     Social initiations (initiated by the child), especially those of shared enjoyment and joint attention
     Self-regulation of behavior"

This is it.  These are the areas we need to work, and the other things will fall in line much more easily.  Ignore these three cores, and everything will be an up hill battle.  EVERYTHING.  The book goes on to address all these areas in it's next 250 pages.  I have been reading, and highlighting, dog-earing, and underlining.  I know what I am targeting, and what to work on next.  I see clearly where I have been stuck, and how to get traction in all those areas.  And in the several days since I looked up and picked out this completely ignored book I have been on fire.  I have been trying new things with Alex with great success.  I am both excited, and at peace.  I am grateful for being ready to take in the new information.  Grateful for being stuck.  And grateful I didn't actually break anything while hitting the steering wheel and screaming.  Grateful, and ready to truly drive on.